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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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From Chiari to POTS to Lyme

Our odyssey with rare diseases began in November 2014 when my then 14 year old, intelligent, and athletic son, Jaden, was diagnosed with Chiari Malformation.… Continue reading From Chiari to POTS to Lyme

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Cowdens Syndrome

I am a 47 year old man from the USA in the state of KY I have something called Cowdens syndrome. It is a condition… Continue reading Cowdens Syndrome

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Berkeley California United States

Recently my 11 year old son has been diagnosed with dystonia our life has changed overnight I am new to this disorder and I’m trying… Continue reading Berkeley California United States

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