March 26, 2019

1. Do you have a primary diagnosis, if so, what is it?


A: Yes - Type 1 Diabetes. I was diagnosed a month after my 7th birthday in 1999.

2. How long did it take you to get diagnosed?

A: The timeline for how long I was ill with undiagnosed type 1 diabetes is unknown, but b...

January 31, 2019

1. Do you have a primary diagnosis, if so, what is it?

A: I’ve been diagnosed with Ulcerative Colitis - a type of Inflammatory Bowel Disease. 

2. How long did it take you to get diagnosed?

A: It took me awhile to get to a point where I saw a doctor, I thought my symptoms...

January 4, 2019

1. Do you have a primary diagnosis, if so, what is it?


A:  Yes, I have been diagnosed with Myalgic Encephalomyelitis, I was diagnosed with Fibromyalgia too.

2. How long did it take you to get diagnosed?

A: This is an important question because I had been searching for an...

December 16, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: My primary diagnoses are Undifferientated Connective Tissue Disorder, Ehlers-Danlos Syndrome, Trigeminal Neuralgia, and Dysautonomia.

2. How long did it take you to get diagnosed?

A: I was able to get diagnosed wi...

November 17, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: Ehlers Danlos Syndrome (hEDS), Dysautonomia (POTS), and Gastroparesis.

2. How long did it take you to get diagnosed?

A: I first had symptoms as early as a few months old, but it wasn’t until I was in my late teens...

November 10, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: POTS and ME/CFS.

2. How long did it take you to get diagnosed?

A: It took 15 years of symptoms before a doctor even mentioned POTS.

3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) Wh...

November 4, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: I was born with a congenital heart condition. I had to get a VSD, and stayed in the hospital a few days. At the age of 3, I was diagnosed with epilepsy.

2. How long did it take you to get diagnosed?

A: I was diagn...

October 14, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: Fibromyalgia

2. How long did it take you to get diagnosed?

A: 2 years

3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?

A: It had felt like really long...

September 7, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: My primary diagnosis is cystic fibrosis (CF). That has brought along quite a few other diagnoses with it over the years. I also have cystic fibrosis related diabetes (CFRD), GERD, IBS, cystic fibrosis related li...

August 19, 2018

1. Do you have a primary diagnosis, if so, what is it?


A: I have a few! Seronegative Inflammatory Arthritis, Osteoarthritis, Fibromyalgia, Myofascial Pain Syndrome, Degenerative Disc Disease, etc. Not including mental health.

2. How long did it take you to get diagnosed...

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