Dare to Be Rare!

I have a rare disease. It’s called mastocytosis. If you say you have diabetes, heart disease, or cancer, people are immediately sympathetic! If you… Continue reading Dare to Be Rare!

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the kennedy twins dress in pink

we are identical twins living in the Republic of Ireland. We are currently being physically assessed at the Rare disease unit and unit for mitochondrial… Continue reading the kennedy twins dress in pink

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MPGN Type 2

I am going on to my eighth year of having mpgn. This has been one of the hardest uphill battles of my life. I feel… Continue reading MPGN Type 2

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TMAU for life

At almost 43 I have had TMAU since childhood though it was only diagnosed 3 or 4 years ago. It has destroyed every aspect of… Continue reading TMAU for life

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Keep Fighting

Hey! My name is Francisco, 20 yr. old male and I’ve been living with this disease or whatever it is since I was maybe about… Continue reading Keep Fighting

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Invisible Disease

At 16, I almost died due to hundreds of P.E.’s surrounding both my lungs & from a major DVT in my left leg. Three days… Continue reading Invisible Disease

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06.02.2015 Yes I am still alive ,today is my Birthday

Today is my 36th birthday. Three years ago, I was diagnosed with a rare disease – “Pulmonary Hypertension”. When this happened, I didn’t believe that… Continue reading 06.02.2015 Yes I am still alive ,today is my Birthday

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A girl living in a “cushie” world

In October 2008, I was diagnosed with Cushing’s Disease, a rarely diagnosed endocrine disorder involving a hormone-secreting tumor of the pituitary gland. I’d been sick… Continue reading A girl living in a “cushie” world

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Alone and depressed

I suffer from achalasia these past 5 years and it has stolen my life. I cant eat meals now only soft blended watery foods not… Continue reading Alone and depressed

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