Diagnostic Journeys
For many patients, the path to a correct diagnosis of autoimmune disease is a long one. Here we present stories of diagnosis from our participating members. Some are written by the members themselves, others by one of our volunteer writers. We hope these stories help everyone understand the difficulties that autoimmune diseases present to patients, the doctors trying their best to treat them, and the friends and families that support them. Autoimmune diseases are difficult to diagnose. Our goal is to change that, reduce the time to diagnosis, and get patients the right diagnosis and right treatment as quickly as possible.
Go Big or Go Home
Emily's Diagnostic Journey
Warm autoimmune hemolytic anemia
I view myself as someone with a “go big or go home” mentality, and it seems my body adopted that same mentality with how sick I’ve been over the last few years. I had just received a bone marrow transplant for severe aplastic anemia (an autoimmune disease where my bone marrow doesn’t produce enough blood cells). I was finally starting to function a little better, and my labs were trending upwards. But one morning, I started to have extreme difficulty walking around…
I have Sjogren’s
Bexi's Diagnostic Journey
Sjogren’s (SHOW-grins) affects 3 to 4 million Americans, 90% of whom are women, most of whom remain undiagnosed or misdiagnosed. Sjogren’s is a serious autoimmune disease that can impact every organ and system in the body. Sjogren’s is as common as rheumatoid arthritis and about 3 times as common as lupus, two more well-known autoimmune diseases.
22-year diagnostic journey
Lori's Diagnostic Journey
In fall 1994, the skin on my fingers began to crack and bleed. I tried cream, petroleum jelly, and bandages, but nothing provided relief (I learned it’s called “mechanic’s hands”). In spring of 1995, the cracking cleared up, but the joints in my hands began to swell and my knuckles became huge and painful. The pain was constant, but I was still able to do most things, though I lost dexterity.
Getting a diagnosis during COVID
Therese's Diagnostic Journey
Therese first felt something was wrong in March of 2020. She saw her primary care (nurse practitioner) because she was sick with viral infections from October 2019 to February 2020. She initially had a dry, nagging cough that lingered for months and felt like something was off with her body.
A dizzying, (mind) numbing journey to diagnosis
Christina's Diagnostic Journey
In July 2014, the night before she was supposed to take her mother to a musical in Toronto, Christina woke up to find the room spinning, feeling as though she had just stepped off a carousel. Her head felt heavy as she crawled nauseously towards the bathroom. She went to see a doctor, who diagnosed her with vertigo.
a Diagnostic Journey From Exhaustion to Health
Salma's Diagnostic Journey
My diagnostic journey began when I was 36. At the time, I had no symptoms other than constant constipation. This would be brought on by even the slightest change in what I ate. Even before I turned 36, it was not uncommon for me to feel constipated, since I always had a sensitive stomach.
“God, when we meet you are going to have to explain why I had to endure this.”
Russel's Diagnostic Journey
Graves’ disease; type 1 diabetes; rheumatoid arthritis
For me autoimmune disease has been a long journey, often forcing me to look to heaven and say “God, when we meet you are going to have to explain why I had to endure this.”
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