For Peter and Ruth
My mother also had severe nosebleeds and received many transfusions over her life span. In 1961 she was the very first person to have the operation of covering the nasal mucosa with a skin graft. She also had liver AVMs and GI bleeding which, as she got older, became worse. She died at the age of 64.
In my brother’s early 30s, he experienced painful back symptoms and a loss of sensation in his upper thighs. After a couple years tolerating this, he went to many specialists.
A physician saw something in my brother’s spinal column and performed an operation involving a large incision on the side of his spine. It took almost 10 hours to delicately pull out the tangled AVMs. Had my brother not had the operation, he would have died of a spinal aneurysm.
Most of his life, my brother was plagued by one thing after another, which was due mainly to the early damage to his spine. I’d say he was miserable. But he was a stoic - all the way to his death at age 75. He has two children, and one has inherited the gene.
I cannot stress enough that no matter how much you can donate, you will be making a contribution toward research that was long in coming.
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