Make your own free website on



I had never heard of this organization until the summer of 1992 when I was resting my weary body in a waiting room on the fifth floor of a hospital.

My husband was sleeping across the hall after undergoing a blood transfusion. This was an every week occurance for him.

When I had taken him to the hospital with what I thought was congestive heart failure the doctors in the emergency had thought that was the problem too. His shortness of breath and swollen ankles and legs. All pointed in that direction. The doctor on call was ready to start an iv with lasex for the water retention and send him up to intensive care as soon as the blood work was back.

Another doctor motioned me to come into the hall and away from where I was sitting on a stool in emergency room by my husband.

I joined the doctor in the hall and we walked away from the doorway and he began asking me if my husband had had an accident or anything that would cause a hemmorage. I told him I was certain he hadn't as he was retired and we were together on a daily basis. Hardly ever apart for any length of time.

I questioned him as to why he was asking that question and he then told me that three forths of my husbands blood was gone from his body and he was near death if he wasn't given a transfuson as soon as possible.

Of course my husband had to be told that something was wrong and he absolutly had to have the transfuson. He objected at first because of his fear of contacting AIDs and I will admit the thought crossed my mind too.

We talked it over and decided we really had no choice if he was going to live long enough for the doctors to find out what the problem was.

Many tests were done. X-rays,MRI,more blood work and finally a bone marrow test. They took a sample from the marrow of his hip bone and there they found the problem.

All the doctors, and there were several on the case by now were able to tell me was that my husbands bone marrow had ceased to manufacture blood. It must have been slowing down for quite some time and had gone undetected due to the blood thinners he was taking for a heart condition.The easy bruising would have been a good clue for the doctor to spot on checkups if not for the medication he was taking. A side effect of these medications is bruising easily.

I asked the doctors for a name. I had to have the name of the disease. I wanted information but they had none. All they knew was that he wasn't producing blood any longer and it was a genetic problem. Something he was born with and predisposed to get some time in his life.

This was how I happened to be in the hospital with him that day when I picked up a magazine to read while I waited. It wasn't a medical magazine and I only remember it was a woman's magazine.Something like Good Housekeeping or Red Book or something along those lines. I happened on an article about rare disorders and saw this orgaization mentioned that day.National Organization For Rare Disorders. NORD. I copied down the address,informed his doctor that I wanted the name of what was wrong with my husband and wrote to NORD. These wonderful people in this organization wrote back and sent me information on the disorder and all the work that was being done to try and find a cure.

They put me in touch with others with the same disorder so I didn't feel so alone anymore.They were a God Send to me.

I am still not able to write of the illness except to say that nine months after the diagnosis and many many transfusions of red cells and platlets, my husband lost his life to this rare disorder.

If you know anyone with a rare disorder or want to help this organization please visit this site. They publish a monthly newsletter and help those in need.

You don't have to be alone.

Bill, this page is for you and I love you still.

Please visit this site.

Back To Links