Our very own Dr James Miller Dr Miller well I want to say good evening to everybody and um I am very uh happy to be joining you all tonight on this uh platform um I’m a retired physician uh I practice Internal Medicine in the city and in the Western suburban areas of
About 40 years I retired from clinical practice in uh 2017 sorry 2019 however I’m still interested and I’m still trying to heal the community in those ways that I can without really writing prescriptions but teaching and mentoring and uh helping uh to uh uh get give people the knowledge and
Information that they need that they can uh uh have a healthy body and a happier life so we’re here tonight hope to joining our colleagues to learn and to uh teach so uh we happy to be aboard and happy to do what we can to answer whatever question that we can
Answer outstanding and thank you so very much to that urologist extraordinaire who hates accolades but he’s the man you can listen to him every Sunday when they say the statement is there a doctor in the house that’s our very own Dr Terry Mason Dr Mason thank you Nikki and I want to
Thank you and the congressman for creating this this for this uh forum for us I’m grateful to be here I’m a retired urologist practice Urology about 25 years in the city and uh then did a St of uh different areas in government work serving at the commissioner of health of
The city of Chicago and both Chief Operating Officer and the executive chief executive officer for Cook County so it’s given me an opportunity to see things for many different Vantage points and I’m grateful to be here and share what I what I can with you thank you so very much well to that
One who’s known as Dr 100 on these streets to the one who keeps it a okay she’s always going to give you the honest heart to God truth but she’s here to make sure that you are healthy that’s our very own Dr Maya green Dr Green good evening hi I’m Dr Maya green
Also known as Dr 100 because I like to keep it 100 I just want to wish everybody a um happy today is uh the national uh day of transgender remembrance or national transgender day of remembrance um honoring all of our our uh siblings who identify as transgender um and you know what better
Way to do that then to spend time with tribe and Community I’m happy to learn from the community and happy to learn from my ex them Co esteemed colleagues here thank you Nikki thank you Congressman for making this forum outstanding and thank you so very
Much to the man who says that he is really the wolf Puck of healthc care he is that infectious he is that family medicine doctor but he’s also a weight loss Guru that’s our very own Dr Tony Hampton Dr Hampton thank you Nikki and uh don’t call me an infectious disease doctor
Just yet but I’m working on it so uh I appreciate being here uh family and obesity doctor really focused on healing the community with wellness and nutrition and and really just any opportunity to stand before you guys and and share what I have learned and can
Share to help heal the community is what I love doing and even on a late night after being in clinic all day seeing 28 patients still having time to be with you guys is a passion of mine and I appreciate the opportunity Nikki so let’s do
It all right thank you so very much to our special guest which isn’t just a guest but she is so special she’s been here before and she shares great information and that’s our very own Mill Mill why don’t you tell us about yourself and your foundation I’m so excited to be joining
You guys again I am not a doctor I don’t even play one on TV so uh but I’m so excited to be here my name is Millard Don and I am a national Sickle Cell Advocate I am the founder of the MTS CLE cell Foundation we are passionate about raising
Awareness support and sensitivity surrounding CLE cell disease um I I have three daughters who all have CLE cell disease so that is my reason for doing what I do in this space and again I’m just so honored to be with all of you again outstanding and thank you so much
Well uh while we’re waiting on the congressman to get here because he wanted to actually share this special announcement with you that as of October 26 a company called vertex geared up to launch a Sia cell therapy because we are so close to having a cure
We have our doctors here today and our intern go over uh what CA cell is how it affects the body things that CA cell does and how patients actually suffer and then we have Millar who can talk about some of the trials and tribulations that she has been through
But she has been such a stellar advocate for cacil and also working along with vertex then we can share some of the great things that vertex doing we are looking for this great launch that they have within the next I think it’s like 28 to 30 days and this treatment is
Going to be approv for any patient that is 12 years or older so let’s get into SI ofel and really talk about what it is Dr Miller as an internist who probably saw many patients who suffered from SI ofil what did you see Dr Mill you’re muted Dr Miller un mute
Yourself okay so CLE cell disease is a disease are affecting the red blood cells of our bodies we all have red blood cells white blood cells platelets so it affects the red red blood cells and because it causes uh the cells to actually which mean they change their
Shape normally they over shaped and when they become sickle uh the the cells then um Clump together and that uh create a problem with the flow of the blood within the vessels and when blood doesn’t flow well it creates something called esia and esea mean that we don’t
Get adequate blood supply or blood flow and it also cause the blood to uh uh to become I would say I’ll call it thicken which is uh again affecting the flow of the blood and this process uh is associated with severe pain in those people that suffer from this problem uh
And so you know over my 40 years of practice I I’ve seen a lot of I saw a lot of patients with Cel disease and by the time that I obviously retired we had no real cure there were treatments that we we uh we had have done over that
Period of time to try to relieve the pain and try to uh stop the sickling process and uh you know just the the fact that there is something now on the horizon that’s going to U change that uh is obviously a great u a great occurrence will be a great occurrence
And um you know we many many patients that uh have suffered from this it is a disease that is more prevalent in in black people and um therefore uh you know it is it’s has again it caused some acute problems which is mainly pain but over the period of time it causes other
Chronic changes which U those changes when blood doesn’t circulate and flow the way that it should which is changes like developing es schic changes which cause uh the individuals to uh to develop sores and other kinds of things that can get infected it just creat a difficult uh clinical condition for that patient
And and affect their ability to have a uh to have uh to function During the period when they’re in during those crisis that they the painful crisis so um you know so it is a u it is has been a devastating disease for a number of
Years and if we can see some ending to that process something that’s going to uh relieve the uh relieve that uh that process man that is uh that’s that’s that would be great to sometimes you get a lot background noises so I try to mute
But I’m not so thank you so very much Dr Miller you know a question has arrived in our confidential chat that says when a sale well let me go into the beginning of the person’s statement they gave a statement first thank you Dr Miller for thank you Dr Miller for the education
You stated that it turns from being round to being a sickle what does a sickle look like and why does it change so yeah so normal celles are like I said in over shape so when these cells become sickled they uh develop what we call a a
Furrial a a a uh um more instead of being rounded it become somewhat elongated and it it uh and and so uh that in itself create uh part of the problem with the flow but it’s it’s more than just the sickling of the cell but
It’s it’s a it’s a it’s it create uh again uh increase um uh thickening within the blood and so affect the flow of the blood through the vessel but the shape changed from around or over shape to somewhat them in up long kind of shape all right outstanding well Tony I
I see that you you are geared up come on you’re funny um okay so what you know I I was watching a uh squirrel uh actually a rabbit in my backyard uh when in the summer and you know they they go from your yard to the next yard and I’m like
How do they get under the fence right and they just they’re able to kind of get in there and I don’t know how they do it but that’s kind of what a normal uh blood cell can do and when you have Sickle cells they just can’t do it they
Get stuck and when they get stuck they wreak havoc on your body and so imagine uh you have all these blood vessels in like everywhere in your body the only place you don’t have blood vessels is the corny of your eye because it breathes through the air your hair your
The top layer of your skin maybe the enamel of your teeth your nails everywhere else you have blood vessels so all of these parts of your body have to uh allow blood to trans you know transfer through it and the hemoglobin is what the oxygen is being carried in
So imagine uh what is that going to make you feel like if you can’t get that hemoglobin traveled through you’re going to you’re going to be tired uh you and if it gets into your uh joints it’s going to cause a ton of pain um you um
And that pain is not just in your joints I remember when I when I was at West Suburban hospital in Old Park you knew these patients very well because they were always in the hospital like every month every other week and they were in there to be treated for their you know
Their pain symptoms they would come in with abdominal pain they would have visual issues uh and so it was really a devastating disease particularly because of that if you imagine the blood vessels can’t travel through the the hemoglobin can’t travel properly your risk for a stroke is higher your risk for a seizure
Is higher and so it was really uh fairly devastating for the families and uh and and as my colleague has suggested uh the the treatment was you know a lot of pain management a lot of hydration and things of that nature and it just wasn’t really
Ideal uh and then you know more recently the the treatment start to improve and I know we’re going to talk about uh some advances but conventional medicine has really not uh served us well one of the things that we do nowadays uh is uh you know we do bone marrow transplant so if
A person comes in and we can get some bone marrow from a match that’s a good treatment the problem is maybe one out of four of these siblings who are we’re trying to match are actually going to be a match so so you have to kind of win
The lottery with that and then we have a medicine uh called hydroxy Ura uh that some patients get and that increases uh the production of uh a form of hemoglobin that you know helps prevent red cells from becoming sickled so so we have treatment out there but I don’t
Think we’ve ever had a conversation around possibly curing it other than the bone marrow conversation and you have to get lucky so so if we can come up with a treatment where can allow everybody and no matter if their family has it or not or you know our matches that would be an
Ideal State and when you think about the the people who are affected sub Sahara Africa people in America African-American descent it has a devastating effect and and literally people who are um thinking about getting married need to make sure their part you know are do you have CLE cell trade or
Not you know because if you got two people with the trait then you got about a one and four chance of the uh babies getting sickle cell and the trait is not so bad but the disease as our guest would attest to can be pretty devastating so I’m really excited about
Us being able to talk about the advances because uh if you have taking care of a patient with this it could be pretty devastating I can’t remember what the life expectancy is but it’s not normal uh and even and I think hydroxy Ura and these advances have helped but it’s
Still not at the level should be so I’m really excited that we can maybe one day normalize the life expectancy for people with CLE cell all right well Maya I it looks like you had something to say too I don’t want to leave anybody out no I think the
Doctor said it um the doctors that spoken have spoken said it um very comprehensively the only thing I would think about adding so CLE cell effects one in every 360 africanamerican um babies um you there’s no way you don’t like get sickle cell while you’re living you inherit it so if
You if you have sickle cell you were born with it there’s no way to kind of catch it or things like that and um typically people won’t see symptoms you know people don’t indicate any pain to about um to about the sixth month of life and how do you know know you have
It um they’re screening so uh typically um when you’re getting your care um when you’re in the parents belly there’s screening and there’s screening after that can be done um the screening at newborn uh if not done before uh they screen you for it and then they’ll let
Your parent know or let let your family know uh I’m a visual person so I have my little let’s see if I can get it if this is a sale floating you all know I mean it’s it’s more it has a lot to do with uh the overall charge electrons protons
Whatever you want to call it on on things and the makeup of the proteins within the cell and how they’re attracted but essentially they form this kind of dome right I like to the simplest way for me to think about it is when you put one drop of water on the
Table that drop of water holds to itself but if you mess around to mess up that drop so it’s not this like Circle drop and put another one near it it joins together right so here’s my it’s it’s really a circle but look at I mean
It’s really like a disc so one you know it’s not this long but let’s just look at it and then the difference when it sickles is something triggers it and it gets into the smaller blood vessels so if I’m here I’m going through the big blood vessels I’m not having any
Problems but then I get to go I get ched I get a sickle and it forms like this sometimes I like to for added rtiz I like to make that little these little Corners here now imagine this going through scraping the vessel scraping the heart scraping the joints things like
That now I’m talking millions of them I’m not talking about one Cale this is one Cale Millions at one time causes a lot of pain um for people who experience it so what do they do they stay hydrated at it uh exercise so that their body their blood Muses dilate more and things
Like that it’s used to it and then um my patients they had it mainly try to stay out of cold temperatures you know or things that for them individually will send them into pain or what we call it uh crisis CLE cell crisis that’s all I would add thank you Dr
Mason well you know the only thing I I was just thinking about is that in addition to what my colleagues have already said that when these cells changed into this shape they often time can cause blockage and can cause the blood to flow to to actually slow down a bit uh making
The condition even more adverse we saw this in urology um especially men would end up with this problem and it cause sexual issue sexual dysfunction for for the men who had this um and it also was painful and I think that we can’t underestimate the discomfort that this
This diseas is C this disease causes and it’s and and it’s doesn’t matter whether you’re a teenager or an adult or what have you the pain is is real and it’s there and the um and what happens is because these cells as my colleagues have said sickle they end up blocking up
The channel sometimes in certain parts parts of the the vascular tree that mean it stops the blood from moving freely and that creates additional problems and it could cause problems with spleens it could cause problems with other organs in the body that um people who have this disease or parents who have children
That have this disease or even young adults themselves know all too well from the times that they had to spend so much time in the hospitals and I’ll end by saying that we had to be careful because it’s very painful and you don’t want you have to balance the pain medication so
That you don’t actually addict somebody uh but give them enough so that they can have the kind of pain relief uh that’s necessary and perhaps some of my colleagues who’ve done more of this more recently than I have can speak on this or maybe mom who because she’s obviously
Had to deal with this for some time and I just want can add just one of couple other things that as Dr Mason talked about how uh as the cell gets uh caused damage to the vessel the spleen is one of the organism one of the organs
That does get damaged and often time get destroyed now the spleen is an important organ that has to especially when we’re talking about numac pneumonia that help in terms of providing the antibiotics that’s necessary to combat that so without a spleen U there which is what the the individual that suffer from
Having an autos spanc or we call it autop when there damage that occurs that destroyed the spleen now they have to deal with the things that uh lacking the things that the spleen um doesn’t provide and also uh you know there’s a whole number of as was mentioned things
That U Can can trigger the uh a sickling crisis uh infections and u a number of other things and there’s nothing that the individual can do to stop or to control when these these uh processes are going to occur and so it it it is uh
You know it is it is a situation where it it obviously going to affect one’s uh quality of life I mean if you’re working if you’re in school there’s going to be a lot of days that you’re just not going to be able to do what you normally would
Be able to do when you’re when you’re in crisis and so so it’s a it’s it it has a tremendous effect on quality of life I I’ll add this real quick I want to kind of comment on um you know we’re we’re pretty holistic in how we think
About uh how you take care of yourself and um you know I what I found in my patients who had it now unfortunately a lot of these patients I’m taking care of adults now and they were mostly kids and you know what does a kid do when you’re
Trying to tell them take better care of yourself right what does that look like and for me it looks like to the extent you can control it you’re going to try to live a life with as you’re going to reduce your stress right so if you kids
Who or adults who have this who have very stressful lives they’re going to have more frequent Sickle Cell episodes that’s fairly obvious and and and what talk to a kid that likes to get enough sleep right you find one I want to meet them right kids don’t they want to stay
Up all night you know playing video games and things like that I I I I’m going to bow down to our guest because I’m I’m sure she’s dealt with them not wanting to get rest but honestly you got to get rest if you want to reduce the
Number of uh flares that you have so and again another thing my mom taught me very well she taught me about drinking water right and my mom I thought I didn’t know what was going on she was a water drinker so I had to become a water
Drinker I tend to put a little lemon in my water to help me drink water but Mom was right if you’re not hydrated uh because your your arteries are just like pipes right so if you put more fluid in those pipes then maybe things will travel through them a little easier so
So I just think that you know I I hate when we have uh you know limitations on what we can do we do want to focus on some of the stuff we can do and and and in my opinion that’s why I have a nest right nutrition exercise less stress
More sleep you know all of those things are going to help us to reduce it something that’s very difficult to deal with so I just wanted to throw that into the mix outstanding well Connie Taylor is here and she says good evening to everyone Jackie Robinson is here and she
Says good evening Tama Thomas is here she says good evening everyone and hey to Uncle Terry Dr Lolita Travis is here and she has a great question Dr Travis asks does this condition cause memory loss can I take that on yeah absolutely um not necessarily that it causes memory
Loss um and of course I want to start off by saying Clea affects everyone differently even with my three daughters who same mom same dad same genotype it manifests differently um among all three of them where CLE cell may cause memory loss um comes into um the fact that CLE cell is the
Leading cause of stroke especially in children and often times it’s not necessarily going to be an obvious stroke where you can tell that um a person has experienced a stroke it could be silent and when these occurrences happen you know you it does leave an impact it could be IQ points that are
Loss it could be your you’re starting to exhibit um neurocognitive issues and so for my youngest daughter even though she’s never had an obvious stroke she doesn’t she’s NE she’s 14 never had a pain crisis but for her her struggle with sickle cell is more so neurocognitive and she is we just found
Out in December she is high risk of stroke and so all those happenings in her brain there’s when you look at her MRI you see like chunks of her vessels that have literally disappeared so in instances like that one of the ways that CLE cell manifests for her is that she
Really doesn’t retain much so she struggles in school like tremendously oh wow wow well I am happy that vertex has what they have and what we’re doing and the strives that we has done you Nelly pernel is here and she says good evening to everyone is here and she says
Garrison is here and she says good evening con Ado says hi to Dr Hampton and then we have another person who’s here uh jodina who says I’m recovering from a stroke as we speak well we’ll be praying and then we know that you can get through it trust and
Believe that you definitely can well Dr Graham your thoughts why don’t you share your thoughts with us on siel and how it could affect a patients who also suffer from arthritis or could it cause yeah they’re not mutually exclusive or you can have the misfortune of having both and the part that I
Remember when I was going through my training was we’d have some command some very very serious bone pain because when those blood vessels can’t circulate in and out of the bones especially the long bones it’s really really uncomfortable it’s a lot of pain required hydration oxygen and medications and I must say
I’m hoping that right around the corner that we’re going to have some kind of genetic way to approach this because medications themselves weren’t able to really stop the progression of what was happening happening and to me my heart goes out to your daughter because I can’t imagine how you can be with your
Friends in school and progress the way that they do when you don’t have the same things that they do um thank you so much uh Dr Graham and also just to elaborate on that my 19y old she’s currently in college um she had to take this semester off because
She developed avascular rosis in her left hip so um we had she had to have her hip replaced in September and you know that led to its own little challenges but um that is something else that happens with sickle cell over time the bones can deteriorate so just help everybody
Avascular necrosis is is when the head of the hip doesn’t get enough blood supply and you need that blood supply to feed that bone so it’s not getting oxygen it’s not getting any nutrients like any other plant when you don’t get what you need that bone collapses and dies it is very very
Painful so that’s kind of how I think about EV vascular necrosis oh so oh wow Mill can you walk us through a day of or walk us through a sicker cell crisis oh wow um from a caregiver’s perspective I mean they’re all so different and I think also what is good
To keep in mind is that a crisis can happen anywhere and sometimes we’re going through certain crisis and we’re not even think thinking sickle so my daughter had a crisis in her face and we were thinking it was like a dental issue that was happening but it was a Sickle
Cell crisis or in her arm um in her back it it can occur anywhere um typically what has to happen there are some crisis where she feels like she can handle it at home because we have hom meds and we will start there but once it escalate to
A a place where she feels like okay Mommy I got to go in um and for her typically her intense crises lead to um uh acute chest syndrome and that’s a blockage of the blood flow in the lungs so we get to the hospital she has to be on some really hard
Narcotics um and sadly um you know children as young at I mean babies are having to have these narcotics because the pain is that severe uh typically where there maybe anywhere from a couple of days to a week or a little over a week um not in school
Missing so much and having to come back from school and C do that catch up um pray praying that you don’t have to go back because sometimes you know you never know how a a crisis may happen you may think you’re good to go they
Discharge you and you have to go back uh we just had a situation after her um after her surgery she had uh she developed a pulmonary embolism and we were in and out of the hospital for like a whole month so um not all crises are the same
So it’s hard to really just kind of paint a picture for you but it’s it’s very painful um and it’s one of those things where it it halts her life and it halts my life because I’m there with her I think you answered the question greatly because you explained that it’s
Not just something typical that people are looking for they’re looking for people just to you know say oh well my tummy hurt or something but you said she had a crisis in her face you thought it was a dental issue there’s been a time she’s had a crisis in her arm I mean
There’s the crisis that happened with the hip and which led to a actual hip replacement for such a young person so yeah I mean you oh no go ahead no a lot what she’s still in the uh pediatric setting but this um surgery had to
Happen at an adult hospital and a lot of the nurses was like oh my gosh you’re my youngest patient they’re so used to you know older um folks having these surgeries but yeah so you answered you answered the question greatly we do have a question from our great friends over
At the course Center who are working they just wanted to send a question over for everybody to answer and their question is what could bring on a crisis are there triggers all of you don’t jump at that question at the same there’s enough space for different for everybody it’s
Different about this for my training was illnesses are great triggers anytime that you’re affecting the delivery of oxygen which affects the red blood cells if you have a flu if you have a pneumonia if you have an infection this all changes the demand for oxygen in your bodies and can force those red
Blood cells to change from round to the other figure so that was what one of the things that that I could remember from my training okay Maya Dr you got some stop on what could be some triggers uh sure um I think we mentioned some before um for my patients I’ve seen
A lot of the cold weather triggering it um things like high altitude uh physical labor I think Dr Graham mentioned infection for everybody it is different you know um I thought and forgive me for if I uh I thought uh Miss Don Mrs da uh was
Going to take that one that’s why I was so quiet because I think um I love you know the way it’s what the experience of triggering looks like in the home I think gives people a better picture of what they should you know think because I’m like high altitudes cold weather things like
That but um when it’s real it’s real 100 right I my Reas for being quiet because I was like is uh you’re the expert in this area so um i’ I’ve of three of my kids only one has um crisis so it’s just for her stress is a trigger
Um the cold weather can bring on a crisis but you can’t tell that girl that she loves the cold and I keep telling her it’s not about what you love it’s what your body is telling you that that it does not love but um I think for
The the most part her trigger is stress and then sometimes you have those moments where it just comes on you know they don’t you don’t know what the trigger is okay I got a question for dehyd dehydration uh when you’re dehydrated that that is that is a good
Trigger I my question I had was you know kids are they like to be kids and they they think they’re invincible and they can do almost anything anytime anywhere and I wanted to know how do you help your child adjust to a different kind of reality if I could say it that
Way uh yeah that’s a loaded question because we even we dealt with that a lot you know they wanted to do there was this one year um they wanted to do step you know like you guys know what step is right um right and so I was scared for them
But they had friends in high school who were joining the step team and they wanted to do that and so what I what I had to do and that was my first time allowing them to do anything physical um for me that was when I
Decided to let go and let God but at the same time let everyone around them the coaches um and I do that anyway just letting people who are going to be around them in terms of teachers or um in this case coaches know what CLE cell disease is to ensure that they
Themselves are helping them stay hydrated to make sure that they’re taking breaks and different things like that um and just telling them to make sure they’re listening to their bodies because at the end of the day they have to learn these things they have to learn their limitations uh not necessarily that
We’re putting limitations on them but listening to your body as far as what is going to trigger you to have an episode or what’s going to make you feel like okay I may need to take a break and not overdo it because I’m GNA end up in the hospital so
Um also they they weren’t outside of Step they really did not you know try to be active that much except for my my middle daughter who just went to college this semester her senior year she just decided to like do so much and I was like you know she wanted to play soccer
She wanted to play volleyball and I just saw it as like something something uh um it seemed like something she was going through where she was you know trying to see what she was made of because I mean she’s never had a pain crisis but she had a stroke when she was
In the second grade and so like since then she’s been doing monthly blood transfusions um she I never saw her as a sports type of person but her s year she wanted to try everything and she did really well she was you know she she hung in there she was very active did
Not go into a crisis because that was one of my fears she’s never had a crisis is this what’s going to trigger her but you know she tried it and she was able to excel in you know these new things that she was trying so I’ve always just
Taken that role of you know not pushing them but at the same time always leading with education whether it’s them or the people around them because uh one of my philosophies is you know trying to build a village around my kids so that I’m not the only one looking out for certain
Things that’s right and then just for um to move into what you were talking about there are two types of stepping right there’s a Chicago step that little two step uh that that you can step to to uh come get to this by Marvin Gay and then there’s the stepping uh that originated
In West Africa where you use your body and your uh to dance but those dances make coordinated sounds almost like a drummer a lot of HBCU a lot of fraternities and sororities do it they do it at HBCU they do it better at Alabama A&M than Xavier but you know Dr
Tony would you know yeah yeah oh yeah and they were really good their team won uh Regional State and National they got to step for the governor um I mean it was a great experience but I’m not going to lie I was really nervous now what schol what what school are they at
Millar well at the time they were at love joy High School okay yeah very good thank you for sharing because they hadn’t gotten to a you know well I’m not gonna repeat those school names but they hadn’t got there yet someone thinks that may be the best I mean but it’s okay you
Know Dr Miller uh jodina stated that low iron can actually trigger as well why don’t you talk about what iron is really quickly and what low iron or what that can yeah so um as we go back let me just sort of put up explain the red blood
Cells are one of the well the major function is that it the hemoglobin carries oxygen our bodies need oxygen all the tissue need oxygen and uh when it doesn’t get it uh then they’re there are consequences and usually they’re not good uh the consequences that you it can
Even you know if you if if you’re if you’re not able to um build up the uh needed level of oxygen in your blood I mean it can be life-threatening and even cause death so iron is important in building hemoglobin it is so so when you’re when you are if you have a
Deficiency of iron so you can end up having two things that causing you to be anemic one if you sickers are are anemic because they have a problem with man with with uh with the manufacturing or producing uh cells that are that that are that are adequate so they’re anemic
To start with and if you happen to have a deficiency of iron that itself also can cause anemia and so if you got both of these things and your oxygen carrying capacity uh you know the the you have a double effect on your oxygen carrying capacity so more anemic that you are if
You get a hemoglobin uh in in normal PE people uh people don’t have sickle people that are okay usually hemoglobin is usually you know above 11 12 uh but if your hemoglobin drops down to six to seven uh which it can happen if you have IR deficiency or if you’re sickling
Quite a bit and so therefore your oxygen carrying capacity decreases and this this decrease in oxygen can uh precipitate sickling crisis if if you’re deficient of iron so yeah and let’s just take a young lady who uh you know is is in the menstrual age and uh she has
Sickling but also she’s she’s losing iron with her bleeding each moment and if that isn’t replenished she has a double whammy going in terms of things that can affect her her red blood cells and ultimately cause an increase in in the in the uh number of sickling incidents that
Occur outstanding and thank you so much there are so many questions coming in sure go ahead M um on the flip side of that um a lot of CLE cell patients are overloaded with iron because one one of the ways that we have been able to um keep crisis at Bay
Or in the case of my two daughters prevent Strokes have been through blood transfusions well if um if if patients are getting simple transfusions where it’s not more of an exchange where they’re taking blood from you and then giving you uh new donor blood cells that
Can lead to iron overload which a lot of sickle cell patients currently deal with that can lead to organ damage and a whole host of complications too wow all right thank you so informative we’re getting so many questions and I think people on both ends we’re getting tons of tons of
Questions but I have a question what about Gene editing therapy when it comes to Cel I just want to throw that out there and if anybody wants to tag along to I see great smiling faces so I’m excited yeah um when I thought about us talking
About this topic um I got excited and I think the biggest smile should be on our guest’s face and her babies right because um you know some people think that myself and Dr Mason are anti-drug companies now we will give them a hard time but I don’t know that we’re
Anti-drugs my wife is on insulin right so I app appreciate pharmaceutical companies and the people who do the research so there’s a company called uh vertex Pharmaceuticals and another company called crispa therapic Therapeutics and they uh you know are working on using gene therapy to treat um CLE cell
Patients and cure it potentially so they there was a article published in the New England Jour Journal of Medicine that talked about and it it it appears from that research that there’s the potential using gene therapy to cure uh you know the the CLE cell so that those painful
Crises and things like that go away so this is recently published I think in August so it’s very new and the process is called X EXA cell EXA cell and it’s like this Gene editing process right so imagine there’s this enzy of course company crispa Therapeutics had to put
Their name in there so they have this enzyme that they name crispa ca9 and this this enzyme goes into the genes of a person with CLE cell and makes cuts and the enzymes goal is to Target specific genes that allow stem cells to produce high levels of feto
Hemoglobin and and Fetal hemoglobin is important because you may ask why don’t the babies with CLE cell end up having CLE cell crisis in uteral right and that’s because they’re they have fetal uh hemoglobin and not hemoglobin a which is adult but when they’re born it it
Converts over from one to the other so imagine you have this this crispa ca9 that can then make this change then converting your hemoglobin to fetal hemoglobin which is the kind that doesn’t really SI sickle so how cool is that so so basically it’s like a
Switch it’s like they they they do this work they they do the little switch and all of a sudden now we’re making more fetal hemoglobin and with that model they’re finding that there’s less of those uh basal occlusive you know those uh complications that we think about that
Pain that that risk for that chest syndrome all of those things get much better by using technology um so everything that we learn about this is promising there’s always risk when you’re starting to play around with je which is why people were freaking out about vaccines and things
Like that um there’s always the risk that when they addit the genes that there’s a risk that there’s some Downstream effects uh but the bigger risk or the biggest concern I have is going to be cost because when I learned about this and looked it up it said that
The therapy could cost as much as two milli dollar now I don’t know you know I remember when uh we came up with a a cure for Hepatitis C and um and it was probably in a $70,000 range but it wasn’t two million so so it’s great news
And that we may have technology to to now potentially uh cure it or put it at a level where it doesn’t cause symptoms but there’s going to be a cost issue Etc so it’s really exciting because uh we’ve never had anything like this and I’ll be honest I thought when we first started
You know learning about chromosomes and genes years ago particularly for cancer I thought everything was going to be curable right and their finding this more complicated than that for cancer but because it mutates but for this this is a much more straightforward approach and uh so I think that the good news is
That we do have this treatment I don’t know uh how available it is yet I know the research is being done and has been done but I think it’s starting to get to a point where it’s going to be available to the public so so I don’t know if our
Guest has any insights to that part um I may have a little insight um well it has been improve approved in the UK and um it’s looking it’s looking very favorable here possibly within the next month we may hear something really good yes um so it’s it’s such a hopeful moment for the
Sickle Cell Community um of course um I I am with you as far as the cost um how how Universal of a cure this is but um we we’re also very optimistic um as a family uh it’s it’s a little bittersweet because we my my oldest daughter who had the hip replacement she
We actually did a consultation for gene therapy not the not the vertex one but she was denied and the reason for that is with any of these Curative options um the patient has to go through so much like chemotherapy and all of that um it’s not
As intense with genam therapy as it is with a bone marrow transplant because with gene therapy they’re essentially implanting your your your stem cells back into you so the the chemo is not as aggressive but they still have to prep the body and and go through chemotherapy and for my oldest daughter
She is considered hard to transfuse and that is because during one of her blood transf maybe one or two blood transfusions she picked up antibodies that over 99% of the the population the national population has so she can only take from less than 1% and so for her she’s a high risk m
Um but we are excited uh for the community we know that there are so many advances happening in CLE cell and we pray that you know there there will be some things that come along whether it’s manufacturing red blood cells in the labs which I’ve heard of we’re hoping
That other Innovations will come along to to help her but this is a great news for the Sickle Cell Community for sure what’s the ages of your kids uh 14 uh 18 and 19 so just think about like CU When I I just Googled what the cost would be
To be a CLE cell patient it it ranged all the way on the lowend 6,000 a year annually cost medical cost all the way up to 63,000 right so now let’s be let’s go to the high end and we’ll multiply 63,000 times you have to take us to the
High end right right so so to me although and I don’t want the cost to be two million but what I’m saying is and what happened you know what happened with the uh Hepatitis B is the costs have plummeted right so it’s always high in the beginning they’re trying to
Recoup the cost of research but at the end of the day if it’s going to cost me 60,000 a year to just live then those numbers start to make sense particularly as you start to think about the cost going down so and in my experience has been I was shocked that they recovering
The hepatitis C it was almost like a once you went through the the the the process of being approved they just covered it so I do believe that our society will value this enough to cover it we just have to kind of fight for it and and just give more people
Opportunities to be covered uh compared to the ones who are the more high-risk people uh but we’re we’re the whole panel and everybody that’s checking out tonight it’s gon to be a whole lot of prayers going up for you and your family because I I could only just raising two
Kids with technically no problems other than something in their head is hard enough so I couldn’t imagine uh what you’ve been through and I really want to just celebrate you as a mom there are some people I just want to celebrate all moms I want to be thankful for the
Holidays because moms the stuff that you guys do not that we don’t do our part we do but I just know what you’ve been through as a mom uh what you’ve worried I mean just being able to sleep at night worrying about your babies right so I so
I want to applaud you for all you do thank you the other thing I wanted to do too is to uh on that same note is how do you keep it together mean not being funny not I mean this is this is because I can imagine the toll
This it has on you you know and and for moms and out there of other children who have sickle cell and what have you just just having to deal with how do you keep your children from feeling that they got punished somehow or some of the things that may run through their
Minds how do you and I know you just how you you probably have an approach to it but just to keep them feeling positive about themselves that they had nothing to do with what’s going on with them and it’s not their fault and there’s not you they didn’t do something bad or you
Didn’t do something bad that created this outcome for them so just how you know just how do you keep them lifted up other than in prayer um I think one of the biggest things that I’ve always um encourage the kids and been open to is having that mental health
Support there are certain conversations that I understand even as a mom I am not the best person to have those conversations with certain fears with my kids they’re they’re so very close maybe it’s because they all share this condition and so they feed up of each other often
Times T Tulie is my oldest daughter oftentimes her crisis will be triggered by the fact that her sister is in the hospital or you know something that has to do with uh maybe a a procedure is coming up and she’s concerned but she really doesn’t quite know how to ask
Questions or Express that so uh very early on I have always um encouraged them to talk to psychology when we go to the hospital I will request psychology especially if I know that something different is coming up a procedure is coming up so that they can speak to them
In terms that they can understand and they can ask whatever questions that they may have um but at my core is and this may sound really odd but there’s a sense of gratitude that I feel because I’m originally from Liberia that’s West Africa and I’m just grateful to be in a
Place in a country where my kids have access to care um it’s not always perfect you know the Sickle Cell Community we’ve had we’ve had to fight for everything um we our patients still are not believed there’s a whole lot of mistrust in the medical system because patients when they’re when they’re in
Pain they’re made to feel like they’re faking the pain or they’re drug addicts so we have all those issues but at my at my core I’m I’m just so grateful that my kids were born in a country where we have access to care and we utilize that
I you know through the way that I advocate for them I am praying that they are picking up these things so that they too can be their first Advocates to learn how to speak cordially with their medical team knowing that this is a group decision and not something
Somebody’s going to force on you but it has to do with great communication and I try to emulate that so that they themselves can can see how it is that I am navigating their care and they too can practice that when they become older but um at my core is that sense of
Gratitude and so that helps me to just we go through our issues and we get back to living life thank you so much so grateful we if she’s in pain I can take her to the hospital they take care of her we go back to living life and that’s basically
It outstanding simply simply outstanding well our time is Drawing Near but there are a few things that we want to first of all my pillar I want to thank you for coming on as always I want to thank you for sharing um and our hour is Drawing
Near but I have a couple questions I want to ask everyone on our panel well Thanksgiving is Thursday and we want to be um very clear with our viewers about how Thursday what are some good things to do so I’m gonna ask each of you as
You do your until next Monday I you to share the following how to stay healthy how not to get sick and what we shouldn’t do for Thursday and I’m gonna start with Dr Mason I figured you would you know well my thanksgiving’s been very diffic different since I don’t
Eat any animal flesh at all so I I do eat greens and things of that nature but I think people should enjoy it in a way that is safe for them I think people should be aware of what it is they’re eating but more importantly why we’re
Having this day and for you what does it mean for you and your family and um and there’s so many things there’s so many layers to that question I can’t get into them all but I just want folks to begin to be a bit more reflective on that day
Because we don’t all have to we don’t have to be here none of us have to be here and we should all be grateful for what every day we get in good health and my prayers go out to to our guest and her children and all the moms and dads
That are F dealing with some sort of problem chronic problem with their children and that the thing that we should be grateful for is that we are in a place to your point Mom where you at least can get treatment and you at least can Avail yourself hopefully of
Therapies that will give them a better life going forward outstanding thank you so very much well du you’re up next so Nikki I think it’s a great question and there are two things I’d like to say and one is while it may not be that way in Chicago this is flu
Season right now in the USA and in the Deep South the rates of hospitalization have doubled over the last week so we’re going to be big being with other people we’re going to be socializing so if you haven’t had your flu shot or your covid-19 it’s a good time to get those
Vaccinations the other thing I think about is you know we’re used to doing lots of things on Thanksgiving and here’s the opportunity to say to ourselves well maybe I should have more vegetables and less stuffing here’s an opportunity to say well maybe I should have a smaller piece
Of pie instead of a bigger piece of pie now I love in pumpkin pie that’s gonna be a hard one for me but here’s the opportunity to kind of think about this and think if we want to be healthy for Thanksgiving next year this is the time to start making the
Changes all right Doug outstanding thank you so very much well Maya you’re next um you know uh Mrs Don I want to thank you for coming on here and educating us uh sharing your story uh thank you for the work you do uh I heard there was
Some you know uh caregiver kind of groups I hope you are you know I love therapy for everyone in the family love support for everyone in the family I sing you any support energetically that I can and how you receive it uh how do you what do I want people to do for
Thanksgiving wash your hands get the thumb wash your hands get the thumb you know not after you eat before and after you eat that’s it see you next all right wash wash them hands that’s okay well Dr Miller you’re up next well I think that um you know we
Should remember the spirit and the reasoning and what this holiday really is about is being thankful and um even though there are a lot of things that we are dealing with that are that are very um trying um the fact that we still here and still have opportunity to uh make
Improvements in lives and in the health of our community and and uh we we we uh we we should be thankful for that and I think that if we spend more time uh dealing with the real reason then we’ll be less concerned about overeating and those those those things
So coming together as family seeing each other that maybe we don’t get chance to see each other as often let us enjoy each other and let us be thankful that we have each other and let you know let’s let us not uh come together and and the only enjoyment that we have is
The dinner because there’s something that is more important than the food on Thanksgiving and that’s what this whole holiday is about being thankful for what we’ve been able to receive and that we made it to this point because there’s a whole bunch of folks uh over the past
Few years that U didn’t make it and you know I to mention the um the U the fact that covid is on the rise not just in the South even in Chicago um you know I read something that I think it’s up like 17% and there’s still people dying every
Day in I think the average is at least one death a day in in Chicago so let us be uh let us not uh forget that and let us be careful with that and if you’re at risk uh make sure that you protect yourself the best that you
Can outstanding thank you so very much well Tony the ball is in your court well thank you uh every time first of all I want to thank you Nikki uh I can’t remember when you invited me to this platform the first time but you got me trapped now so I’m
Happy there goes my Monday nights right so I appreciate you I’m just grateful that you and Dr Pete invited me um I wanna and it’s so funny you’ll put this animal-based Conor next to this uh vegan guy and I think that’s always fun that we’re like right next to each other on
These live streams so for those who are uh who follow me because I sh share this on my YouTube channel it’s so nice I’m grateful that I can share this platform with an animal-based uh uh doctor like myself and a more of a vegan docor like Dr Mason I I’m glad he
Tolerates me and I just want to say that I love him appreciate that we can actually go back and forth for those who are celebrating Thanksgiving who are more animal-based if you’re you know some people will have an Indulgence day and if you feel it’s safe to do that
Feel free to do that get back on track afterwards for those can’t do that uh let’s do some meat without the barbecue sauce there’s you know you can have some greens you can have that those green beans you can have the cauliflower mac and cheese if you haven’t tried it it
Works really well and uh in in a lasagna Maria IMR has a great recipe for lasagna that doesn’t have all of that stuff as well so I looked up our guest’s name is it is it pronounced Millar Millar Millar so Millar Millar right I looked
It up and you know what it said it said that that name is represents a Powerhouse uh someone with confidence and strength so when we think about what you represent to your family all of that makes plenty of sense so I’m really also grateful that you were on this platform
Tonight because that platform allowed us to talk about a topic and and introduce gene therapy for so many people that’s going to provide hope so I’m grateful for that and I just think everybody being grateful and thankful because it’s contagious and if I’m around people who are grateful and thankful then the
Person next to me is GNA get that win and the person so it’s like the butterfly effect so everybody as you celebrate Thanksgiving even with those crazy relatives who you know crazy and they’re gonna be crazy on that day you find something in them that’s positive everybody has something good about them
And you lift that up and you focus on what’s good and that that’ll make that crazy be less obvious so enjoy your day no time for negativity and uh and I just want to thank all you guys for this platform and opportunity to be with you
Guys all right thank you so much thank you every good at all right I’mma research that thank you my pillar yes you’re up you’re up I think we can all let’s be reminded to stay hydrated uh definitely the Sickle Cell Warriors but you know I think we
Can all benefit from being uh a little more hydrated um and whatever it is we eat to do so in moderation and I am just grateful for more another Curative option coming on the market for Cle cell disease wouldn’t it be wonderful if we could get that approval on than
Thanksgiving day I am hopeful for that so thank you so much for having me absolutely outstanding outstanding well there are a few things that I want to share first of all the congressman that meeting has went over and he’s been trying to get here to get to us but he
Just wants to tell everybody thank you for being here and thank you for being a part and he’s excited over what is um happening with these breakthroughs you know some sometimes people don’t understand all the levels of government and as the federal government we are responsible for all 50 states and we
Work with those in all 50 so this is exciting to see this happen to see how many lives we may be able to impact Millar my arms are stretched all the way to Atlanta Georgia where you are and I hugging you and telling you Thank you so
I am so grateful for you I have enjoyed these last working with you because you have stay true to your name and your mission with your foundation and your mission is and a lot of people may not know it’s a mother with a mission and that mother
With the mission Miss Millar is a warrior and I actually have a warrior sweatshirt if I hadn’t known we was gonna actually talk about sick and cell tonight I worrior sweatshirt on because I appreciate all the hard work that you do and I am thank you I really am my
Thoughts of what everybody should eat for Thursday let me share do not eat undercooked Tur showing up in anyone’s emergency room eating undercooked meat so make sure that the C the turkey is done if that little piece in that turkey that popup thing that’s supposed to tell you that your turkey is done and it pops up the turkey still isn’t at the right
Temperature and isn’t looking right it’s okay to have blackened turkey and I’m not just talking about seasoning make sure that that bird is completely done please do not stuff the turkey before it is done make sure that we cook all this moderation and cook it properly because we don’t want anybody
Getting sick am I correct Dr Miller for the cooks on the on the call we want you are healthy please do not eat anything we don’t want you to eat anything we do not want you in the emergency room poison so please don’t do that and do please remember to eat in
Moderation the last thing you can do is show up at the emergency room thinking you’re having a heart attack and it’s really just because you have ingestion because you ate too fast or you ate too much they’re leftovers and leftovers are better they taste better the next day
Because they’ve marinated some so save room for Friday that’s what I want you to do save some room for Friday what are some of the things that I’m thankful for well of course you know that I’m thankful for Millar but if I don’t say it I actually am so
Thankful for each and every one of you here today I love you all in all of our special ways I am thankful and grateful and I just admire all the great work that you all do Dr Mason Dr Graham Dr Maya Dr Tony and Dr Miller all of you
Are simply fantastic and I like to give people their flowers right they’re here so I want you to know that I am thankful for each and every one of you and you guys do great work and God speed to you all want to remind everybody to make
Sure that you get all of your vaccines don’t forget the newest covid vaccine let’s be safe if you can tolerate and take flu vaccines please do so don’t forget your pneumonia everything that you need to extend your life and remember to be healthy this week uh well actually last
Week I was channeling my Dr Terry Mason because people were saying that they were dieting before Thanksgiving so they could prepare for the food and I said oh diet that means to die you have to do live it that’s what’s most important good night everyone have a great one take care until next
Monday
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