#Rare Disease Day

https://rarediseases.org/shareyourstory/

Rare Disease Day
How has your life been impacted by rare disease? Please share if you are a patient or a caregiver and which rare disease has affected your life.

For all my blog followers, Facebook, Instagram, and other sites, Rare Disease has become part of my life. My partner and I were invited to Rare a disease Day a few years back, in Sacramento, California. I blogged about the event back then. The Zebra, one has made it to Alaska for my mom. The Event opened my eyes on how rare of a disease I have.

I am a patient with primary progressive multiple Sclerosis, researching all aspects.

In 2018, I was sent to the Cancer unit for Thick Blood. UC Davis found two copies of the H63D gene, causing Iron overload. Less than 3% are diagnosed with hereditary Hemochromatosis. I went thru 17 phlebotomy, to bring down iron.however, since I was the first person they have seen with the rare H63D gene, my iron never returned two years later. This has recently caused complications, so writing this beforehand to be published.

2021 the world is in a pandemic of the Covid that has killed more than wars have.Special masks are required to go out. Only specific Grocery Stores and Needed necessary stores open. Many businesses did not make it thru 2020, when the virus hit us hard from China.

A Vaccine is sitting, awaiting in California for months now. One of the same researchers of the covid vaccination may of stumbled on one for MS.

https://www.dailymail.co.uk/sciencetech/article-9138167/BioNTech-creates-multiple-sclerosis-vaccine.html

Why is Rare Disease Day important to you?

There are so many rare diseases that are not counted.

https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/

This day helps me reflect on how far I have come in researching the H63D Gene, genetics of Hemochromatosis, iron or anemia.

The Rarity of my Gene.

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https://rarepatientvoice.com/EverchangingMS

What is one thing you'd like the public to know about rare disease and the challenges patients and caregivers face?

A Rare set of two copies of the mutated H63D Gene can cause iron overloading in less than 3%. I happen to fall into that category.

rs1799945(GG)5H63D Two copies of H63D, 5.4% chance of iron overload. This I got.

HFErs1049296(CT)3Pro570Ser - risk allele: T (Pro589Ser) This is called TF C2. It creates an increased likelihood of iron loading when combined with any c282y and h63d because it forces a reduced TIBC resulting in higher levels of free iron and free radicals. This also Increases susceptibility to Alzheimer's disease but only when combined with c282y.

I had 17 phlebotomy or vein puncture in last quarter of 2018. My Iron has not returned two years later. My gut derailed after phlebotomy. My EGFR dropped to 45 during the 17 phlebotomy. This causes concern for CKD, to be talked about in another blog. Hematocrit and blood thicker than pancake batter.