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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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GOD BLESS YOU ALL

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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My son was told to take a bath in kindergarten by a teacher.

I was 6 months pregnant when I received a call from the doc saying something is wrong with your baby you need to go to… Continue reading My son was told to take a bath in kindergarten by a teacher.

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CRPS/RSD

In July of 2012 I fell and thought I fractured my ankle. Because of the fracture I had to have ankle surgery, however, the pain… Continue reading CRPS/RSD

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