52 living with sickle cell
My childhood was painful always swollen and in pain legs feet joints ... In my time they said I had juvenile arthritis.. terrible fever . No one dr knew .. frequency of transfusions.. but in 2012 I was so low in blood passed out .. and was admitted in the hospital.. and tested.. and found out it was sickle cell ss.. I have a mediport. .. and suffering with more than ever now .. more pain crisis ... More swelling daily pain ... But all in all I'm still here .
Hi Alaine,
Thanks for sharing your story with us. It can be very hard to cope when you don't know what's causing all the joint pain but a sickle cell diagnosis helped you pinpoint the issue. One recommendation I would make is to tweak your diet a little so you can reduce the number of joint flare-ups you're experiencing. Try to cut down your consumption of processed sugars and increase your fluid and salad intake. Also, see if you can take up beginners' yoga 3 times a week (you can start on YouTube)as stretching helps me a lot. This will help with the aches and get your blood moving. Do you have a hematologist who could advise on treatment options like hydroxyurea or Oxbryta?
Hi
, I am so sorry to hear that things have been worse. I'm sure it was so frustrating to not have an answer from doctors. Has your healthcare team been able to help with the pain at all? Sending lots of love and healing your way! Best, Allison (Team Member)
