Hydroxyurea and exchange blood transfusions are the only options in treating sickle cell. Throughout many years of hospital admissions I only received top up transfusions which bring your haemoglobin to a normal level, but it never prevented going into crisis. It took 6 years of constant hospital admissions for my haematologist to offer hydroxyurea or EBT.
Having received exchange transfusions for 4 years now, I see the huge difference it makes to my health. Granted it took a year for me to stop going into crisis frequently but I saw the difference it made. I had more energy, I wasn’t sickling as much and when I did, I didn’t need to go into hospital as I could manage my pain at home. As time went on I started to question why it took so long for me to have a proper treatment plan? Why did I go all those years suffering when I could of been offered something that would truly help?
There are only 2 treatments that help sickle cell so I don’t understand why haematologists are so reluctant to offer either. Sickle cell can cause complications when you are in crisis, so I never understood why doctors wouldn’t do everything in their power to relieve sickle cell symptoms. The only cure currently available is bone marrow transplant or stem cell transplant but you have to meet certain criteria to qualify on the NHS: you have to of had and survived 2 strokes. I have never had a stroke and pray I never do so I wouldn’t qualify. The thing that baffles me is that there is already limited help available but we still have to suffer and go through so much to get the treatments available. I think the thing that hurts the most is that we have to survive 2 strokes to get a cure. Sometimes it just feels like sickle cell is so dismissed in every way. Sickle cell is the most disrespected, mis-treated and under funded illness in my opinion!
My #sicklecellfamily I pray for your health happiness hope and strength …Alhumdulillah