The Sickle Cell Journey : I thank The... - Sickle Cell Society

Sickle Cell Society

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The Sickle Cell Journey

Tone124 profile image

I thank The Almighty God that. I don't have sickle cell disease because having the trait has been more than i can stand over the years. When i was a young girl i was hospitalized off & on do to Crisis. I had to take shots daily during my stay for weeks at a time. When in my 20's i had criss so bad i couldn't use my arms, times where i couldn't even walk without help. When i turned. 30 all Hell broke lose buy that time i had developed an eye disease thru this Sickle Cell Trait called Sickle Cell Retinopathy. I had laser surgery many times & it did it's job for a while then when i was 44 i almost lost my sight in one eye. I was in risk of a detachment. I had to have surgery it was so scary! I recovered from that but to make this story short I'll always have issues. Now i have aches & pain all the time i take a lot of sleep aides. I don't no what else to do to help my situation. To anyone that says it is uncommon to have Crises with the trait i say to them go back to medical school cause you haven't learned how to treat this Beast. I'm so sorry for the people that actually have the Sickle disease.

6 Replies

I am so sorry about all the hell you have had to face but all this pain and suffering you describe, you got through it, you don't realise how strong you sound and what a warrior you are. I totally accept that when it comes to sickle-cell both the trait and the full blown disease there is just not enough information for people to state that only people with the full blown disease are affected. In regards to how you can manage your pain I can suggest what works for me, (I have sickle-cell anaemia) meditation it works, our disease is all about our minds being strong enough to overcome the pain in our bodies. I also use a infrared lamp when the pain is beyond words. I wish you a speedy recovery.

Tone124 profile image
Tone124 in reply to Anzy

Thank you for the kind words. I very much so appreciate them. I had a brother whom had the Sickle Cell Disease mom would rush him to the hospital countless of times. At the very young age of eight that day going to the hospital my brother ddnt make it he died in the ambulance, so i very much feel for those who has this disease & have the strength to push thru it. Of course like you said there are more things they can do medically to treat the patient now. Thanks to all who take the time to comment on this post. Have a blessed day.

Yes, my heart also goes out continually to those suffering from the sickle cell disease. Years ago after a crisis had just ended, I visited the Howard University Sickle Cell Center. There I was surrounded my the most severe cases of SCD. To this day, I feel guilty asking for medical assistance for my SCT, after seeing SCD at its worst.

Your strength is what will get you through. I believe that just like sickle cell disease has severe and not so severe, sickle cell trait also has severe and not so severe. I have the really bad sickle cell having 3 bad episodes of crises a month. My childhood was horrific. Lost my younger sister when she was 7. My elder sister is much stronger and hardly falls ill. My mum is sickle cell trait and she can suddenly get very ill although she never said she had pains. There is a patient with SCT that comes for regular transfusions because hers is quite bad. I am sure as time goes on more and more doctors will understand that some SCT patients need more information, understanding and treatment. Sorry to hear about your experience and situation. Good luck.

Tone124 profile image
Tone124 in reply to jo19

Thank you for your kind words very much appreciated. I'm sorry for all that has to deal with SCT & SCD.

I am so sorry that you are experiencing this. My youngest son has Sickle Cell Disease. He is hurting all the time now. You sound more like you have full blown Sickle Cell. I have the trait, but i've never experienced symptoms lije you, and I am 54 yrs old. Just make sure you are drinking plenty of water and eating healthy and cutting way back on the sugar....sugar makes blood sticky.

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