Lissie's Blog

Hello!

My name is Melissa, or "Lissie." I have a rare blood disorder called Diamond Blackfan Anemia. There is an estimated 700 people in the world with this disorder. This is where I will keep you updated on my progress. This blog is intended to inform others of this blood disorder and to further awareness of it.

A little about myself --

I was diagnosed with Diamond Blackfan Anemia at the age of 3 months. I have been on Prednisone, a steroid, since then. I am now in my twenties. That's a long time to be on Prednisone. I have suffered some side effects of the steroids, but I have to remember that its the steroids that keep me alive.

My mother also has Diamond Blackfan Anemia. She has been in remission since she was 16. She was also on Prednisone for 16 years. She was diagnosed at the age of 2 months. She was told that she wasn't going to pass it down to her children, but we now know that isn't true.

For my progess so far --

My latest lab results this week were awesome! My hemoglobin (hgb) was 12.9 and my hematacrit (hct) was 35.5. Yay! I don't remember ever being this high in my life unless I've had a blood transfusion and it's been years since I've had one of those. However, I'm still on a slightly higher dose of Prednisone than I'd like to be (10mg/17mg e.o.d. - meaning I take 10 mg one day and 17 the next day and so on - I'm trying to get down to 10 mg e.o.d.). My bones are aching! :(. Saw my hematologist this week. I'll see my family doctor next week and I'll probably ask her to run some tests on my bones since I think may have osteopeonia or osteoperosis - a side effect from the Prednisone.

Anyway I hope you find this blog useful.

Liss