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

Hi Tito Oye,

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

thanks,

Ada

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 m…[Read more]

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…[Read more]

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.

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