Growing up I didn’t know I had sickle cell disease until I was 19, after the birth of my son. I grew up in a time where nobody knew what specifically was wrong. My grandmother treated my excruciating pain episodes with applying heat, massaging me, and having me rest. That was it! I got no narcotics or anything like that. So I would just hurt until my pain went away.
Back then, the knowledge base of sickle cell disease was limited, but fortunately for me, my OBGYN was an African American doctor, who studied at a HBCU in the south. So he was ahead of his time and informed about what to do for sickle cell disease – he even diagnosed me.
After I was diagnosed with sickle cell disease my options were limited. I had access to a comprehensive sickle cell center, where I was treated by people that knew something about sickle cell, but for the most part, treatment was only managing the pain when I had a serious pain crisis. Not even blood transfusions were an option or offered. I hadn’t started receiving blood transfusions until my 50s. You know a lot of us with sickle cell disease don’t have really great veins, so getting a needle in a line was not easy. When I started getting transfused regularly it was suggested that I get a permanent line put in, and I was like, “Oh no I ain’t trying to do that. I don’t want to do that.” It was at this moment, hydroxyurea was offered to me as an alternative to getting a permanent line. I was 55 or 60 years old.
When it was recommended, I started to talk to other people that had been on hydroxyurea for a few years. I made my decision based on what they shared, and chose to start taking it. Once I started on it, I never had another pain crisis. My fetal hemoglobin increased and I just never had another issue – I haven’t been in the hospital in 10 or 15 years for a pain crisis.
And you know, one of the side effects of hydroxyurea is losing your hair, but all the hair came off my legs and off my arms and those were the only places I lost hair. I also have discoloration of my fingernails and toenails (moreso with my toenails) and all I do is polish them so you don’t even know.
When I first started taking hydroxyurea they wanted me to come in for labs once every three months to do blood work. I told them I’m coming every four weeks for them to check. And so, routinely every four weeks and now, after years, I’ve gotten aware and go once every two and a half to three months.
Getting hydroxyurea was the best thing that could happen to me. I was like, “Whew! Too bad nobody told me about this a long time ago”, I could have avoided a lot of that intense pain. Before starting hydroxyurea, every month I had pain – I didn’t always go to the hospital, but every month, I would experience a pain crisis. So for that not to happen anymore for me after starting hydroxyurea was monumental. Also for me, it was not having those hospitalizations anymore.
My advice is to try it. If it doesn’t work for you, then you stop, but the benefits for me outweighed any negative effects. And even if I were to lose the hair off my head, I would just get a wig, because not having that pain interfere with my life was a game-changer.
I’m just grateful and happy to be 72 years old, enjoying my life at this point. I have been able to have a successful career for like 30/35 years. I worked for the school district, got a master’s degree, and have been married for 34 years. One biological child, and four other wonderful adult children,17 grand and three great grandchildren. It’s wonderful, not to have medical issues that require that you stop having fun doing what you want to do.
My advice is to do all that you can to take care of yourself. Follow up with physicians – somebody that has a clue about the things you’re going to be dealing with, especially as you age, you know different things come up. Having someone knowledgeable about what you’re going through, and not minimize what’s happening is extremely important. That’s it, that’s my story!
DISCLAIMER: This content is for educational purposes only and is not to substitute an individual care plans recommended by their healthcare team. Please note, this is one individual account and does not necessarily reflect everyone’s experience. We recommend all individuals living with sickle cell disease to always seek guidance from their healthcare provider to identify the best treatment options for them.
Photo Source: SF Chronicle