It is
better to
have loved
and lost,
than to
have never
loved at all
-Alfred
Tennyson's
poem 'In
Memoriam:
21'
About this site
" Alone we can do something, Together we can do a lot "
- Unknown
Jamaal and Jennifer in 2002
This is before we discovered
the joys of eating! Of course
we are both a bit more plump
now, but none the less happy!
My husband Jamaal was diagnosed with Diamond Blackfan
Anemia at 7 months of age. When we met in college he
didn't tell me about his disorder until almost a year we
were into our relationship for fear I would leave him over
it. By then it was too late and I was in love.
I made it a goal to discover as much as I could about DBA
and how I could best help Jamaal cope with the excessive
medications, doctors visits, and blood transfusions. Three
years later we were married!
With the help of a wonderful group called Blackfan -A
Yahoo! chat group-I was able to gain support and
information from other people affected with DBA and
family members in my position. I noticed that we all had
the same questions about DBA and there was little medical
information available (due to the rarity of the condition). I
decided to create a site that answered many of the
questions that people with DBA frequently ask. I gather
information from group members, web searches from valid
organizations, and other health specialists (such as:
hematologist, oncologist, and endocrinologist that we have
come in contact with).  
It is especially a sickening feeling when someone you love gets limited or improper treatment
because their disorder is so rare and the access to information is limited. Not only is it an
ordeal for the individual but for the families and loved ones as well who want to help but don't
know how. Often, not only is the disorder burdensome enough, but to deal with prescriptions,
medical bills, etc. can also be overwhelming. I hope this site helps those new to DBA and those
living with it now. I try to keep the information current as I hear about it, but if you discover
something incorrect or new to add to the site, please feel free to contact me and let me know.

A brief on Jamaal:
Jamaal has a older sister and fraternal twin brother (no DBA). As a child Jamaal was treated
with Prednisone and blood transfusions 3-4 times a year. He has tried ATG and Cyclosporine
which gave limited success. Jamaal was told he would never live to go to college. In May 2004
he graduated from East Carolina University with a major in Hospitality Management and minor
in Business and now manages for a major hotel chain. This past year we visited several doctors
at Georgetown University Hospital, John Hopkins Hospital, and Schneider Children's Hospital at
Long Island Jewish. It was discovered Jamaal had been on Prednisone for too long a time and
had received so many of the side effects of the drug (such as brittle bones) that it was time
to become blood transfusion dependent. In March 2005 he had a Mediport inserted to make the
transfusions easier. He has been tapering off the Prednisone for the last six months and is
currently down to 10mg every other day. For now he transfuses every 4-6 weeks. No chelation
therapy needed yet, but looks like it will be needed by the end of the year.

Update:As of August 29, 2005 Jamaal has been taken off Prednisone and put on Hydrocotisone
(another corticosteroid) as the endocrinologist says it is more natural. He now transfuses every
3 weeks. Jamaal is expected to stay on Hydrocortisone for 2 years then be able to be
completely transfusion dependent.
E-mail me:
admin@diamondblackfananemia.com