Sickle Cell Disease – The ‘Invisible’ Illness

on the outside Heather looks like the picture of health what people don't realize is this young beauty is battling a life-threatening disease take a look two years ago I had a acute pain in my arm and I also had chest pain and I was gasping for breath I was admitted to the hospital I was afraid because I feel like I was dying they moved me into the ICU they began putting tubes in my body and a breathing mask over my face they pushed air into my lungs blacked out I don't remember anything from that day I was born with simple cell disease I was still my mother's and tested positive sickle cell anemia is a blood disorder the average life expectancy was 40 to 45 years old as a child I was able to run jump and play my parents encouraged me to be an active child painful episodes occurred specifically my arms or my legs usually my joints and as I'm an adult I've started having episodes more frequently all over my body my pain is usually about a 10 out of a 10 and it comes on so fast it feels like someone is ripping off a limb and wearing glass into your veins and expecting you to keep living normally my colleagues don't know I have sickle cell disease I'm supposed to be a normal person without any health issues people do treat you differently they think she's a sick girl I like people to know me as Heather first sickle cell is part of me but it is not all well Heather is here along with our really good friend dr. Freda lewis-hall chief medical officer of Pfizer so welcome Freda and joining us in the audience is Heather's husband Jason thank you so much for being here that this is one of those diseases that many people have heard of but really know so little about and you've lived that right the people they just they don't really get it no they don't you know my parents they raised me like a normal kid they encouraged me to go run jump and play but yet you were in and out of the hospital I was and how did you explain this to the other children what did you say well I told them that it was like having a bad cold for a long period of time except for my colds put me in the hospital right and so school was a struggle because you're always playing catch-up right always playing catch-up school never really was easy for me grade school and even university it was very tough I I walked across that stage in five years with my degree there is sitting here she's beautiful she's accomplished she's courageous and ready to speak out so you come looking her and go so I'm sorry what is the problem here and that's you know really an issue for people with sickle cell disease because they don't know so for starters it is an inherited disease in the u.s. primarily in African Americans or people of African descent and essentially what happens is red blood cells take on an abnormal shape a crescent or sickle shape which is how it got its name and these misshapen cells have a really hard time carrying oxygen as red blood cells are supposed to do and they kind of stick together that blocks blood flow to parts of the body what happens then you get you know you get organ damage and Heather mentioned some of it joints sometimes lungs sometimes sometimes even the brain and in addition to that what happens often with this blockage is what we call vaso occlusive crises these are excruciating ly painful crises that Heather described as a child you people you had a bad cold what do you tell people now I'm honest I tell the truth that there are days where I have to drag myself out of bed I'm in pain every day but there are people who think that I use my sickle cell as a crutch in layer on top of that this terrible stigma from childhood to adulthood as children you know is it contagious that I'm going to catch it why can't you come to school why aren't you here you fall behind as adults why aren't you woodwork you're lazy so the stigma is huge in fact your brother is affected as well yes my brother was diagnosed with sickle cell around age 1 and because of that they tested me while my mother was pregnant and I was diagnosed when I was still in her stomach so it's inherited it is an inherited disease and there's a lot of confusion around that too so in order to have sickle cell disease you have to have 2 genes right so inherit it means that it's a genetic disorder you need 2 genes for sickle cell 1 from each parent if you have only one gene for a sickle cell that's called a trait so let's put 2 parents together right each with the trait what can happen and this is in each pregnancy not for all of your kids so if if this couple gets together they have a 25% chance of having a child with sickle cell disease they have a 50% chance of having a child with the sickle cell trait which means they probably are not symptomatic but can pass the disease along and a 25% chance to have a child that has neither the trait nor the disease so when you talk to your doctor is there a plan for regular care are there things that you can do so for people who have sickle cell you know stay in the game make sure that you stay knowledgeable about your disease stay current with new options resources that might be available so stay in close touch with your treatment team so consider participating in a clinical trial and then last but not least speak up for yourself as a patient but also to help educate people who don't know for the rest of us listen because we have a chance to bust the stigma here not add to it I really encourage you if you want information about this you can go to get healthy stay and they're gonna have a lot of talking points there about identifying these trigger points how to manage yourself in a crisis listen if you have a question for Freda and I we get together all the time and we want to hear from you so go to dr. Phil comm send us your questions I want to thank all of my guests today especially dr. Freda lewis-hall and we thank you for coming and educating and raising the awareness on all this by talking [Applause]

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