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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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Trigeminal Neuralgia

I have ATN, which is short for Atypical Trigeminal Neuralgia. There is no cure at this time! Find others with Trigeminal Neuralgia on RareConnect, the… Continue reading Trigeminal Neuralgia

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TTP Survivor

Rare blood disease. 3 years in remission

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20 years misdiagnosed

I have Alpha-1 Antitrypsin Deficiency in the lungs. 20 years misdiagnosed by many GOs & specialists. I now feel that as soon as they heard… Continue reading 20 years misdiagnosed

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Lupus anticoagulant

I have Lupus anticoagulant which caused me to have a stroke at age 36. Now I will be on blood thinners for the rest of… Continue reading Lupus anticoagulant

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