Autoimmune Disease Stories

Autoimmune diseases are estimated to affect over 20 million Americans, with 70-80% of the patients being women. Although many individual autoimmune diseases are considered rare, collectively this class of diseases is found to be a leading cause of death for women under the age of 75. Recent studies show that autoimmune diseases are becoming more common. Autoimmune diseases include conditions such as Arthritis, Sjögren’s, Lupus, and Type 1 Diabetes yet, traditionally, there has been a lack of awareness and understanding of these diseases and their impact on patients and the healthcare system.

Story Booth has partnered with the Autoimmune Registry to create this special collection to share the stories of autoimmune disease patients, who often struggle silently with their invisible illnesses. As we listen to the stories of patients who grapple with obtaining a diagnosis and finding treatments that work for them, we hope to raise awareness among patients, caretakers, as well as physicians that autoimmune diseases are not rare, and their symptoms, though sometimes invisible, are very real to the patients who experience them. We hope these stories will foster understanding and trust among patients and those working in health systems. We also hope they provide a better understanding to researchers of the real-life struggles of autoimmune disease patients.

The Autoimmune Registry is a 501(3)(c) nonprofit that serves as a hub for research, statistics, and patient data on all autoimmune diseases. Its goal is to streamline the data on autoimmune diseases so that researchers can better understand the complexity of these diseases and to facilitate research by connecting patients to eligible clinical trials. By working with Story Booth, the registry hopes to amplify the voice of autoimmune disease patients and raise awareness on both the prevalence and impact of autoimmune diseases. For more information on the Autoimmune Registry, please visit www.autoimmuneregistry.org or email ingrid@autoimmuneregistry.org.


CALL TO RESEARCHERS

Please take some time to listen to the stories of autoimmune disease patients. We hope their stories can bring researchers closer to the experiences of those they aim to treat and lead to more patient-centric approaches to addressing this class of chronic illnesses. Please contact us if you would like to build a stakeholder-engaged team.

PATIENT STORY

And making sure I'm putting myself in positions where I'm not stressing about unnecessary things.

This storyteller shares how a second visit to a different hospital led to a diagnosis of Lupus, treatment, and the impact racial bias has on getting prompt treatment.

May 02, 2023 | 15m 15s
PATIENT STORY

You never know what someone else is going through

A patient born with thalassemia minor describes other health issues including arthritis, scleritis, tendonitis, vocal cord dysphonia, and goiter and identifies the difficulties of living with these disorders.

July 12, 2016 | 05m 00s
PATIENT,PARTICIPANT STORY

You know you wanna have a quality of life where you can remain mobile

This storyteller shares their experience with the health care system after rapid onset Rheumatoid Arthritis, an aggressive form that also impacted their mothers life too.

March 16, 2023 | 19m 07s
PATIENT STORY

Listen to your doctor

An MS patient describes his experience with a near-death heart attack unrelated to his MS diagnosis; he describes the great care he's received throughout his medical journeys and the importance of listening to one's doctor.

December 08, 2017 | 18m 00s
PATIENT STORY

...'you do not have to suffer, here is how you avoid being in pain.'

This storyteller was in their 20's when diagnosed with early onset arthritis, listen as they share their the health decisions they made and the challenges keeping a health team.

August 11, 2021 | 27m 49s
PATIENT STORY

There's a lot of distrust in medicine

Diagnosed with an autoimmune disease and juvenile idiopathic arthritis, this young woman describes how her health impacted her personal life and what treatments have worked best for her conditions.

July 09, 2019 | 16m 00s
PATIENT STORY

Be aware that you will probably go through many...

This storyteller shares how quick her PCP was able to diagnosis neck pain that was progressively getting worse, but the challenges of finding and keep a Rheumatoid Arthritis specialist in a rural area for continued treatment.

May 22, 2023 | 21m 39s
PATIENT STORY

...was a time for me to slow down and realize the things I really did want.

A month after entering a statewide shutdown, during the covid-19 Pandemic, this storyteller is diagnosed with a autoimmune disorder;being at risk and a physical therapist can make you conscious the changes you have to make for your health and safety.

July 06, 2021 | 23m 36s
PATIENT STORY

"...not just looking at bloodwork, but looking at me."

This storyteller shares their journey trying to obtain a diagnosis with very little sympotoms that soon progressed to recurrent respiratory issues and weight loss ;Hashimoto's disease.

September 07, 2022 | 26m 44s
CAREGIVER STORY

She kept getting sicker and sicker

A daughter details her role as a caregiver for her mother who was battling diabetes ketoacidosis and the decision to go to the emergency room without insurance; she also discusses what daily life is like taking care of a loved one with type 1 diabetes.

June 26, 2017 | 12m 00s
PATIENT STORY

…'thank you', I don't have to come in here and explain every single thing...

This storyteller shares how the onset of symptoms in their 30's led to being diagnosed with a rare mixed connective tissue disease, and feeling their symptoms were minimized while flares left her debilitated.

September 15, 2022 | 26m 43s
PATIENT STORY

Patients are people

After being diagnosed with psoriatic arthritis at a young age, a woman explains her experiences with healthcare providers while trying to find the right medications to manage her symptoms.

September 10, 2018 | 12m 00s
PATIENT STORY

“...I literally had to beg, I had to get urgent referrals…”

This storyteller shares their experience navigating the health care research system, at the beginning of COVID-19, after being diagnosed with Sjogren's Syndrome; an autoimmune disorder.

August 31, 2022 | 26m 53s
PATIENT STORY

"...I was happy to do that, because I thought I was dying. I had told my sister..."

This storyteller was diagnosed with Relapsing-remitting MS, wherein she experienced weaken leg stability , frequent falls and difficulty swallowing and a hospital that didn't do any sort of testing.

August 26, 2022 | 18m 36s
PATIENT STORY

I really don't know how people who aren't knowledgeable about the health care system manage this sort of thing

A woman receives a knee replacement after facing juvenile idiopathic arthritis since she was young, but she experiences difficulties along the way.

August 16, 2018 | 28m 00s
CAREGIVER STORY

"...but recommend some other things that we could do, that would improve is quality of life."

This storyteller shares their experience navigating the health care system and multiple specialists as a caregiver to their spouse who is diagnosed with Primary-Progressive Multiple Sclerosis.

September 02, 2022 | 22m 55s
PATIENT STORY

It got worse before it got better

This patient describes symptoms leading up to the removal of a section of her bowel after being diagnosed with drug-induced lupus post-op.

December 19, 2016 | 19m 00s
PATIENT STORY

The long and short of it is basically going to the specialist was really the best decision I could have made...

This storyteller shares the necessity of going to a specialist when your general health care has stalled on how to address treatment of an autoimmune disease.

March 23, 2023 | 12m 47s
PATIENT STORY

"...he indicated that should have been done."

These storytellers share their experience with nymph node removals and autoimmune retinopathy, a rare disease, and trying to get prompt and concise treatment options.

October 11, 2022 | 27m 34s
PATIENT STORY

I would advise people not it ignore pain or self diagnose

A woman experiencing unusual pain visits the doctor and receives treatment for a lump in her breast, and she later is treated for a blood clot and arthritis.

August 30, 2018 | 14m 00s
PATIENT STORY

...I'm physically a different person, which brings down my emotional and mental health...

This storyteller shares how navigating the care system having been diagnosed with Hashimoto Disease, challenges of that seeking treatment and care during the pandemic with a autoimmune disorder.

September 13, 2022 | 17m 17s
PATIENT STORY

I can't do all the things I used to do because I can't walk as long...

This storyteller shares their experience getting treatment for multiple health conditions and surgeries and arthritis and managing their health after with pain management and programs.

April 08, 2022 | 14m 05s
PATIENT,CAREGIVER STORY

…you don't know how much risk you're at.

This storyteller shares their experience being a caregiver over the last five years and the importance of maintaining your personal health , as she was recently diagnosed with an autoimmune disorder in the midst of the COVID-19 pandemic.

May 19, 2023 | 21m 27s
PATIENT STORY

"...and it's very hard...to convince people that you aren't just tired."

This storyteller shares health complications related to a severe childhood scalp avulsion and navigating the health system with autoimmune diseases as a young adult.

October 19, 2022 | 25m 14s
PATIENT STORY

It's important for us to do what the doctor asks us to do

A woman expresses her difficulties with finding the root cause of her auto systemic scleritis and seronegative rheumatoid arthritis diagnoses and details her experiences with them.

February 20, 2017 | 09m 00s
PATIENT STORY

...that I did not go to med school, but I know my body.

This storyteller shares their health care experiences with Multiple Sclerosis, the diagnosis and treatments received prior and after, the impact as it progresses and finding community for treatment accessible treatment options.

August 24, 2022 | 23m 51s
PATIENT STORY

50 years of being a Type 1 diabetic

A Type 1 diabetic tells his experiences of managing his condition throughout the years as well as how the quality of care has increased as doctors have gained more knowledge on how to treat it.

August 13, 2018 | 25m 00s
PATIENT STORY

I have a voice and I decided to use it

A patient diagnosed with multiple sclerosis shares experiences of finding a doctor, managing symptoms, and keeping employment while spreading advocacy.

May 17, 2018 | 38m 00s
PATIENT STORY

…and it feels like the people aren’t willing to work with me.

This storyteller shares the challenges of having celiac disease living on their own as a student and advocating for better food handling procedure.

February 09, 2023 | 12m 09s
PATIENT STORY

“You find out something new just about every visit…”

This storyteller shares the challenges with having a rare immune disease of the blood; where levels are monitored, recurrence is possible, and medication side effects can be severe.

August 31, 2022 | 21m 13s
PATIENT STORY

I'm looking at my future and knowing that my arthritis is going to be a challenge

In this story, a woman details her experience with arthritis in her knees and hips, how it's changed her daily life, and what the medical community could be doing differently to better patients health issues.

June 04, 2019 | 17m 00s
PATIENT STORY

What I do during the day depends a lot on the arthritis.

This story teller shares unusual symptoms they had after receiving their second shot of the COVID-19 Vaccine and how only time will tell what long-term effects this could have on someone with Rheumatoid arthritis.

July 16, 2021 | 13m 46s
PATIENT STORY

"…Mental health is very important when it comes to illness."

This storyteller shares their experience seeking research and health institutions that could help with autoimmune atrophic gastritis, with very little symptoms and the lack of patient mental health intervention.

August 30, 2022 | 18m 45s
PATIENT STORY

...cause there aren't any guarantees that everything is going to get worse.

This storyteller shares committing to a health lifestyle with Multiple Sclerosis in connection with complex childhood trauma when your dealing with a degenerative condition.

July 30, 2021 | 22m 47s
PATIENT STORY

…I'd only heard of it till I got it.

This storyteller shares how a bike injury in the 70's, led to a diagnosis of Lupus and the following health concerns and treatment journey.

June 15, 2022 | 14m 44s
PATIENT,CAREGIVER,PARTICIPANT STORY

I would much rather have dealt with that for 12 hours...

This storyteller shares their health care experiences during COVID-19 with respitatory and autoimmune conditions.

February 17, 2023 | 10m 54s
PATIENT STORY

I should have been in a coma

A woman experiences some alarming symptoms that lead to her diagnosis of Hashimoto's disease, and she describes the treatment plan and support received in order to manage her disease.

July 17, 2019 | 00m 00s
PATIENT STORY

Arthritis has been part of my life everyday

This storyteller explains his diagnosis of arthritis. He discusses the joint replacements he's had done, the effect of his medications, and the benefit of finding a good rheumatologist.

May 04, 2018 | 16m 00s
PATIENT STORY

10 lessons I learned from an autoimmune disorder

A women shares the important lessons she has learned after being diagnosed with an autoimmune disorder.

November 18, 2019 | 13m 00s
CAREGIVER STORY

Running numbers with no explanations

A man shares his grievances with hospital billing and also discusses his wife's arthritis.

May 27, 2016 | 17m 00s
PATIENT,CAREGIVER STORY

...I want to them to understand that mental health is not a joke.

This storyteller shares their experience during the COVID-19 pandemic with multiple health conditions and the challenges getting health care and addressing a new diagnosis of Hashimoto disease.

June 05, 2023 | 00m 00s
CAREGIVER STORY

The system doesn't work medically or with the law

A young woman describes the story of her diagnosis of Hashimoto's thyroiditis and the struggle to be heard.

April 01, 2019 | 16m 32s
PATIENT STORY

"...and he doesn't think he is the expert. He is a partner in my care..."

This storyteller shares their health care experince when it came to undifferentiated connective tissue disease, an autoimmune disease and Major depressive Disorder, while being a parent and maintain activity.

October 10, 2022 | 24m 58s
PATIENT STORY

I was not prepared for a diagnosis of arthritis

A woman diagnosed with arthritis in her hip details the process of getting diagnosed and how the diagnosis has changed her daily life and future as she's deciding whether or not to get a hip replacement.

October 25, 2017 | 18m 00s
PATIENT STORY

Through my disability I have the ability to inspire

After finally being 17 years free of cancer, this woman reflects back on the symptoms which lead up to her diagnoses of lupus and cancer; she also explains the consequential struggles with treatment expenses while financially supporting her family.

March 22, 2017 | 14m 00s
PATIENT STORY

I'm the one in control of how I feel and what I do

A woman diagnosed with lupus took it upon herself to look up and research her symptoms when doctors failed to diagnose different symptoms; she promotes self-advocacy once finding out she had temporal arteritis and polymyalgia.

April 12, 2017 | 13m 00s
PATIENT STORY

It's amazing that it's so inaccessible-the health care system here. ..

This storyteller shares how difficult it was to navigate the health care system in America versus other countries, and the challenges to be a new patient and get medications and treatment.

October 04, 2022 | 21m 06s
PATIENT STORY

I worry about not being able to run anymore

A patient describes life with major depression and multiple sclerosis, touching on communicating with doctors to get the health care she needs.

April 12, 2017 | 16m 00s
PATIENT STORY

"Finally someone is listening to me..."

This storyteller talks about her struggles finding physicians who listened and took her concerns seriously after having symptoms that pointed to Celiac's Disease and thyroid complications. She wants physicians to consider a patient's history and daily rou

January 15, 2021 | 31m 00s
PATIENT STORY

Constantly reminding myself that I'm not being lazy...

This storyteller shares their experience getting the COVID-19 vaccine, the impact of the COVID-19 pandemic has had while managing a autoimmune disorder, and the dealing with long COVID-19 symptoms.

April 10, 2023 | 13m 05s

Please Note: The contents of this website are for informational purposes only and are not medical advice. Please consult your physician for any questions you have related to your individual medical condition. If you are in need of immediate medical help, go to the nearest emergency room or call 9-1-1.

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