Who's Really Helping Us?

A study conducted by Kenneth R. Bridges, M.D. of the Joint Center for Sickle Cell and Thalassemic Disorders identified issues that affect people with SCD as:

Under-education - Under-employment - Medical bureaucracy - Basics of Living - Depression - Antisocial - self-destructive behavior.

I agree with all of these findings. What I want to know is anyone really helping people with sickle cell?

I’ve seen web site after web site telling us what they’re doing for people with sickle cell AND asking for donations.

I know, nothing is free.

But my questions are:

1. Are people with sickle cell disease really getting help with Social Security disability red-tape, disabled employee rights assistance, or disabled student rights assistance?
   


2. People with sickle cell disease in some cases Have TO work. Who helps them when they get fired for taking off work sick?
   


3. People with sickle cell disease in some cases CAN’T work. How/what/where do they get SSA application help?
   


4. People with sickle cell disease in some cases are depressed, lonely, in pain and live alone. Who is really giving “hands on” help?

I have more questions than answers.

I looked all over the web for some examples of people doing (hands-on) things for people with SCD and I found a few. I will profile these people/organizations in future blogs.