Sickle Cell Disease – from Birth to Advocacy
Congressional District: MO05
Blood Disease, Chronic Pain, Ear / Nose / Throat Disease, Genetic Disease, Migraine, Rare Disease
Issues and Challenges
Jemela has encountered: Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Transportation, Copay Accumulator, Disability, Financial Assistance, Invisible Illness, Medical Discrimination, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Underserved Community
My name is Jemela Williams. I was born in Kansas City, Missouri and I am 41. When I was a baby, there were times when I would cry very badly, so much that I would turn red in the face and my hands and feet would swell. My Mom didn’t know what was causing this so she took me to the local hospital. What I was experiencing was hand and foot syndrome, one of the first signs of Sickle Cell Disease in infants. I was soon diagnosed with Sickle Cell Anemia, Hemoglobin SS at around 3 months old.
Growing up with sickle cell anemia, I knew I had to be really careful about being out in extreme weather, stay fully hydrated, dress appropriately and do my best not to overexert myself in order to stave off a sickle cell crisis. However, many times crises are unpredictable and they just happen. When I was younger, I had a lot of issues with infections. For instance or for example, Common colds that would always turn into something worse. For example, whereas other classmates would get colds and possibly be out of class for a day or two, I'd catch the same thing but it would lead to pain, body aches, fevers, ER or doctor visits and missing possibly a week or more of class.
Also, ear infections were a constant bother. I remember being in my classroom in the 2nd grade and listening to the teacher talk and then having the whole classroom just go silent. All I saw was her lips moving and I heard nothing. I also had issues hearing commands from my Mother at home, listening to the TV, and issues with school hearing tests at times. I recall sitting for several hearing tests as a child at the hospital and well into my teens and having my very first surgery for tympanostomy tubes due to my ongoing hearing loss.
At age 6, I experienced what would be one of my worst complications due to sickle cell and my compromised immune system. I was out with family and friends when my Mom noticed I felt feverish and then I vomited. Soon I was very listless and I barely recall what happened next. They rushed me to the local children's hospital where they found out I had streptococcal meningitis.
There are still a few things that I don't remember about that time, since I was fairly young. I do remember my body feeling very tired and I still remember the serious looks on all the adult's faces when they'd come to visit and how they tried to hide them for my sake. I remember taking physical therapy and receiving help from the Nurses to assist me with standing and walking, and having sixth nerve palsy for a little while, which was indicated by the crossing of one of my eyes, so I had to wear a patch over one for several days until it healed. My Mom has told me many times about the time my heart stopped in the middle of the night and doctors and nurses rushing into the room. That was my second near death experience since arriving there. But I came through all of that without any additional health issues. I stayed for 15 days, past my 7th birthday.
As Sickle Cell Warriors we face a lot of stigma, racism, bias and lack of awareness when it comes to our disease. It can be very difficult if you don’t have support around you, or some sense of community. We also lose fellow sickle cell Warriors from our community often and that can take a toll on any of us. After losing two of my close friends from complications due to sickle cell disease some years ago, I was soon diagnosed with clinical depression. I realized then that my mental health was just as important as my physical health and it was not the only thing that I had been neglecting since grieving the death of my friends. I eventually ended up having my worst sickle cell crisis ever the summer my friends died, leading to a month long hospital stay. I had never talked to a mental health professional before, but it helped tremendously. Talking helped me get out feelings that I didn’t even know I had and it helped me express myself to a stranger in ways I couldn’t express to friends or family, if that makes any sense at all. It was somehow easier to say things to someone I didn’t know than it was to talk to people I did know. Now I advocate for mental health awareness and stress that those living with sickle cell disease make sure to not only take care of their physical health, but our mental health too, because they go hand in hand. It’s so important that I surround myself with support that I know I can trust and lean on whenever I need them, not only family, but friendships with other Sickle Cell Warriors who understand what it’s like to live day to day with this disease.
I love to advocate for sickle cell disease. I advocate not only for myself, but I specifically advocate for Chris and Devin. I advocate because they are not here to do so, so I hope in doing that, I’m advocating for all the other Chris’s and Devin’s who are no longer here and unable to speak for themselves. I originally started getting more vocal about SCD because I was sick of not hearing anything about it in my local news, on tv, in the paper, and nowhere in the world news, it seemed, unless it was something negative. I was also missing my friends terribly and since their deaths, the few other Warrior friends I did have, had drifted apart, and so I no longer had any friends with SCD. That’s when I became more active on social media. I turned to Facebook, and then to Twitter, where I started using the hashtag #MySickleCellLife, which soon turned into #SickleCellLifeOfMemej and is what I use now. After getting more involved online, I soon started attending functions held by our local SCD Chapter, and eventually became a board member. I have now been a board member of Uriel E. Owens Sickle Cell Disease Association of the Midwest for two years now. I enjoy teaching others about SCD and updating friends and followers on my own life with SCD. I have really enjoyed meeting fellow Warriors and making new friends along the way. Becoming immersed in the SCD community online has opened my life up to a whole new amazing world, one that I only wish all Warriors had access to.
Today, I manage my SCD by taking scheduled pain medications, a host of vitamins and I stay hydrated. I take SCD treatments Endari and Hydroxyurea. There are many days that I have daily SCD pain and chronic pain, and yes, sometimes I can't possibly tell the difference. But I am rarely hospitalized and I don’t visit the Emergency Room (ER) as often as I could. There are days when the fatigue is ten times worse than the pain and vice versa, but support from friends, family, my Warriors support group included, helps to keep me going through all of this. I am very fortunate to have the health that I do have and I don’t take a minute of it for granted, ever. I have not had the bad experiences that a lot of Warriors have had, mistreatment in the ER, blatant medical racism, constantly being mislabeled as a drug seeker, etc., and that is another reason why I advocate. I have a responsibility to help and I use social media to spread awareness of the mistreatment to Warriors in the ER. I have always had my Mom or someone else present whenever I needed to be in the ER or in the hospital. Everyone doesn’t have that. So I try as much as possible to help others when they reach out to me and find someone to help advocate with or for them, whatever they need. I advocate to spread awareness of SCD globally because people need to know about this serious disease and that patients with SCD do matter. But mostly I advocate to let SCD patients know they’re not alone, because I know what that feels like, to think that you are. Sickle Cell can be a lonely disease, but it doesn’t have to be. I share my story because others with SCD need to know that it's OK to share theirs too. All Warriors have a story and we need to be heard. Everyday we are learning more about SCD in hopes of it leading to a much brighter future, possibly one that will eliminate SCD altogether.
Sickle Cell Advocate
Chronic Pain Advocate
My Motivation and Inspiration
I am constantly motivated by the fact that I am still here. There were times where I never thought I would make it to this age because the pain was so bad or because I’d read that sickle cell patients don’t live this long, but there is no limit to what I can do and no limit to what other Sickle Cell Warriors can do either. I am inspired by older Warriors who show us more than anything that there is no expiration date on Sickle Cell Disease, no matter what any doctor has ever said to any parent or any child. I am also inspired and moved everyday by my Mother. She raised me as a single mother yet somehow she was always there whenever I needed her, in the ER, hospital or doctors office. Sometimes we had no transportation and she would travel via bus through rain, sun, or snow just to make sure I made it to every single doctors appointment. She is truly a phenomenal woman.