Rare diseases

Multiple sclerosis is listed with Rare Diseases.
Both Wil and I had The opportunity to go to the Rare Diseases Convention held this last Saturday, in Sacramento CA 2019. rearediseases.org

They had it set up for 75-100 people, but I felt more connected to the small group of sixteen that showed.   Wil and I, the only guys.  I could not keep up with the disease names or short names the people had, or a loved one, like their child died from.  names of diseases never heard of and years to get diagnosed properly.   This conference covered rare diseases and the orphan diseases, which is a disease that has less than 200,000 people that have the disease.  So my rare rare H63d gene that I received from each parent, that was mutated, perhaps a hundred years ago,  is quite rare with me, and my older brother, and one other in 10 years I found. Would love to hear from anybody with both H63d genes that caused Iron overload, for paper to submit to researchgate.net, so other researchers can look at.

I have been in iron overload, with phlebotomy every week since October. I became anemic since January, and numbers not coming back quickly, as my bone marrow makes new blood cells.
My brother, did not know he also is in iron overload. It shows up as high ferritin with him, and bronze skin color.   Bout in the big toe is a sign of iron overload often overlooked.   high hemoglobin and iron saturation with me. Two genes, part of HFE, identical H63d DNA which causes the protien that turns on or off the uptake of iron to the body not working properly.


Rare Diseases had a nice breakfast and lunch spread  set up for us.
The presenters knew their materials and answers to questions asked.

There were some sniffles, and the lady who sat next to me, using mega Vicks vapor rub, so I hope the zinc I Take will head off any of the people that have been coughing or have a cough is not contagious. I can not take vitamin C, because it attracts iron. Fortified cereal, and a lot more items contain iron, or extra C, that I can not tske.

I was glad the conference wrapped up by two, as my body was becoming stiff, and MS symptoms not settling down.  We were quite tired by the time we got home to Wil s Mom, who made home made lasagna for dinner, which we enjoyed after she came home from church.

Our dogs got their walk before rain hit, and we're glad we were home. A night in Sacramento was spent before the meeting, sponsored by rare diseases, as the distance was far for Wil to drive.


I forgot to mention their new site https://rareaction.org/resources-for-advocates/

Thanks for reading
Joe