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Walking Miracle

In Jan. of 2012 I went into the hospital with a heart attack of the widow maker and was told I was lucky that I… Continue reading Walking Miracle

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Gods Love

Hello I am a 51 year old woman,my name is Simona I was born with Von Wiiedbrands Disease and Quebec Platelet Syndrome and Luddles Disease.… Continue reading Gods Love

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PNH

I am 16 years old living with a rare life threatening blood disease called pnh. It causes my bone marrow to fail and blood platelets… Continue reading PNH

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RSD/CRPS

When I was 17 years old I was in a horrific golf cart accident. I was riding shotgun and the driver made an incredibly sharp… Continue reading RSD/CRPS

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Dermatomyositis

After living with dermatomyositis for 7 years IVIG infusion gave me tremendous healing. I am a huge advocate of this type of treatment. If you… Continue reading Dermatomyositis

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Dermatomyositis

After living with dermatomyositis for 7 years IVIG infusion gave me tremendous healing. I am a huge advocate of this type of treatment. If you… Continue reading Dermatomyositis

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IgG4 RD is barely known in the Us

IgG4 RD is an autoimmune disease which can attack any organ in the human body and has only been named in the US since 2012. I… Continue reading IgG4 RD is barely known in the Us

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A Part of Me, Not All of Me

Once again, it is Rare Disease Day and once again I am conflicted. I have what most would consider to be a rare disease. The… Continue reading A Part of Me, Not All of Me

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Unique forms, common names

I am hypermobile. It is suspected that hypermobility is common among the general population, and usually benign or caused by sports (like yoga, dancing, or… Continue reading Unique forms, common names

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