Regaining hope

When I was first diagnosed with Retinitis Pigmentosa, the words that hit me the hardest were “no treatment” and “no cure.” I basically took those… Continue reading Regaining hope

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EKV what’s that short for?

My son was born with erythrokeratodermia variabilis, or EKV for short, in the Ichthyosis group of skin disorders. It presents at first with large areas… Continue reading EKV what’s that short for?

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Never give up the fight

My husband was diagnosed at age 29 with a chordoma clivas. In the last 12 years he has had 7 brain surgeries, 3 plastic surgeries,… Continue reading Never give up the fight

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Behçet’s: 10 years to Diagnosis

I am a 28 year old nurse living with Behcet’s Disease. I first had severe mouth ulcers at the age of 16 which recurred regularly.… Continue reading Behçet’s: 10 years to Diagnosis

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Complex Regional Pain Syndrome

Thanks for reading my story. I am 54, female and live in the US Midwest. After hitting the top of my left ankle with the… Continue reading Complex Regional Pain Syndrome

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Hi my name is Maritiza Williams I have several rare diseases. I have Ehlers Danlos Syndrome, Idiopathic Innercranio Hypertension, Tethered Cord Syndrome and Cranio-Cervical Instability.… Continue reading GOD BLESS YOU ALL

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Overnight Deafness

In 1990 I had had several tumors in my right ear area and had surgery that removed my ear canal, ear drum and just about… Continue reading Overnight Deafness

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Life changing

I’m 42 years old and on 31st August 2014 my life changed. As part of my job, I was setting up a fundraising event, moving… Continue reading Life changing

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Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness

In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just… Continue reading Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness

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