[Ada G.]

I have two that I work with.  They’re amazing!

Sickle Cell 101 ( SC101.org) is a web based organization based in California that specialized in educating the public at large via all social media platforms.  We also have a Spanish page called SC101es. I translate the English social media posts to Spanish.

The second organization is based in Brooklyn, NY.  It’s called Sickle Cell Thalassemia Patient  Network (SCTPN) and besides education they also aid Sickle Cell patients with advocacy, transportation to and from their doctor’s appointments and they lobby for better care.

I’m extremely proud of their work!

Ada G.

[Ada G.]

Something people do not understand is that you may look like a million bucks yet feel like a truck ran over you.  I’d like people to understand that when I say I’m tired or not feeling well, I really mean it.

Thank you,

Ada G.

[Ada G.]

When I was young, my dream job was to be a superstar! LOL!  I still dream in the shower 😊

[Ada G.]

Hi @Kassem yes I had that issue when I was transfusing a lot.  They gave me Desferol, an infusion pump, to where until the ferritin went down.  Thankfully for me, I use Hydroxyurea and I no longer have to have transfusions that often.

Be well,

 

Ada

[Ada G.]

Hi Tito Oye,

yes I’m still on it.  I also take Oxbryta and the combination is really help me.

thanks,

 

Ada

[Ada G.]

Hi, I was part of the study in 1990 when I was 25 yrs old,  and was started on hydroxyurea.  For me it was a life changing medication, my miracle drug. I went from being hospitalized every three weeks to being hospitalized every three years. And the crisis are not as severe as they used to be when I was not taking hydroxyurea. Unfortunately, the medication is not good for everybody. They have not figure out why, but they do see that it works for some and it does not work for others. The only thing you can do is give it a try for at least six months (that’s how long it takes the body to adjust to it) if it doesn’t work can you take him off. For me, my side effects have been elevated platelets but when that happens they lower the dose. Here in the United States studies have shown that children who have been started on hydroxyurea do much better than adults. For example there have been children who have been started at age 5 months and they grow up into an adult and they’ve never experienced a severe painful crisis. I wish I had a world like that.

Bottom line is you have to take the chance.

Best of  luck!

 

Ada