My life story with SCD: I am 31 years... - Sickle Cell Society

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My life story with SCD

arinzemuo21 profile image
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I am 31 years old living with SCD. I have never had blood transfusions but always fall sick at-least every once in a month in rare cases once in three months. I was also advised for a total hips replacement when I was 14 years but Ignored the idea because I was too young according to my parents. At some points I started doing pretty well with the pains as I dont feel it but I do walk with a limp on my left leg. Meanwhile I just read about HYDROXYUREA and heard it is very reliable for treatment of SCD so kindly advise me on how to take and about my hips. Most times when I feel sharper pains I just take Diclofenac or Dolometa Pain.. Ikeja Lagos

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arinzemuo21
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Bluebells profile image
Bluebells

Hydroxyurea has many side effects including loss of teeth and in some cases can cause miscarriages. Be careful !!!

Bluebells profile image
Bluebells

We catch your diet! Drink plenty of water. Fruits,nuts,low fat diet! Research this!!

DMBBMS profile image
DMBBMS

Hi Arin, You've done pretty well getting to 31 without any of the complications normally associated with suffering from sickle cell disease. However I would advise speaking to your local GP/Doctor to book an appointment with a a genetic disease counsellor who could assess your history and blood picture to see what your current disease state is and if there is anything that can be down with lifestyle choices and/or medical management to continue your good health.

Getting to your age without complications is great and maybe due to other co-inherited conditions such as hereditary persistence of foetal haemoglobin of HPFH which naturally causes your Foetal haemoglobin levels to rise, which is exactly the same aim of the drug Hydroxyurea (now more commonly called hydroxycarbamide). As bluebell said there are many side effects from very mild to severe but has been found effective and necessary in many patients.

Keep us posted on the outcome

temtem profile image
temtem

hi, i think u r doing really well but as regards the hydroxyurea is a very good medication because am on it. it helps build ur immune system and prevents u from getting crisis and for ur legs hip replacement is the solution. i believe u r old enough now to do it because if u continue with the damaged hip it will affect the other one with time and it will affect ur mobility generally and ur spine. so i will advice you consider it cause it will help in the pain by stopping it and you will be able to work well without limping.

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