Addison's disease Archives

Photo Courtesy of Sarah Maxwell

Managing a Dual Diagnosis: How Sarah has Survived, and Overcome, Challenges from Addison’s Disease and Stiff Person Syndrome (Pt. 2)

Post author:Jessica Lynn
Post published:February 21, 2023
Post category:Addison's Disease Addison’s Disease Stiff Person Syndrome Stiff-Person Syndrome

Before you read on, make sure to check out Part 1 of Sarah's story. In Part 1, Sarah discusses the traumatic (and life-threatening!) odyssey that led to her eventual Addison's disease diagnosis…

Photo Courtesy of Sarah Maxwell

Managing a Dual Diagnosis: How Sarah Has Survived, and Overcome, Challenges from Addison’s Disease and Stiff Person Syndrome (Pt. 1)

Post author:Jessica Lynn
Post published:February 20, 2023
Post category:Addison's Disease Addison’s Disease Stiff Person Syndrome Stiff-Person Syndrome

When Sarah Williams Maxwell was 18 months old, she was diagnosed with type 1 diabetes (T1D). Outside of managing this condition, Sarah was relatively healthy until 2014, when her diagnostic…

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How “My Rare ID” Supports the Rare Disease Community: An Interview with Jeff Lord (Pt. 1)

Post author:Jessica Lynn
Post published:October 5, 2022
Post category:Addison's Disease

When asked his most important piece of advice for families within the rare disease community, Jeffrey Lord said: Do what you can control and move on from there. Every day,…

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NORD’s Living Rare, Living Stronger Forum: From Bitter to Better

Post author:James Moore
Post published:July 6, 2022
Post category:Addison’s Disease Lyme Disease Timely

The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person…

source: shutterstock

Rare Classroom: Addison’s Disease

Post author:James Moore
Post published:April 8, 2022
Post category:Addison's Disease Addison’s Disease

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

From Healthy to Zebra to Unicorn

Post author:Annie-Danielle Grenier
Post published:November 9, 2021
Post category:Addison’s Disease Autoimmune polyglandular syndrome type II Corneal ectasia

My story starts with me being a normal, healthy kid. Or was I? My parents would’ve said so, and so would I, I think. I just wasn’t very strong or…

source: pixabay.com

Researchers Identify 9 Genes That Increase Addison’s Disease Risk

Post author:Jessica Lynn
Post published:February 15, 2021
Post category:Addison’s Disease

Researchers have not always understood why some people develop Addison's disease, a rare autoimmune condition affecting the adrenal glands, over others. Now, a new study conducted by Swedish and Norwegian…

Living With An Invisible Illness: Patients’ Stories

Post author:Kendall Mason
Post published:October 15, 2020
Post category:Rare Disease

Living with an invisible illness can be incredibly difficult. Those around you do not understand the struggle, and they can even discount your illness. Women's Health talked to three women…

source: pixabay.com

ICYMI: Addison’s Disease: Emergency Cards Issued to Patients with Adrenal Crisis Risk

Post author:Patient Worthy Contributor
Post published:September 29, 2020
Post category:Addison’s Disease

by Lauren Taylor from In The Cloud Copy Adrenal insufficiency, also called Addison’s disease, is a condition in which the body does not produce adequate amounts of certain necessary hormones.…

whitesession / Pixabay

UK Patients with Addison’s Disease Will be Given Steroid Emergency Card

Post author:Jessica Lynn
Post published:August 25, 2020
Post category:Addison’s Disease

Over the last 2 years, the UK has seen 4 deaths and 320 safety incidents related to missing steroid usage, a story from The Independent explains. For patients with Addison's disease,…

New Gene Mutation For Adrenoleukodystrophy Found: A Case Study

Post author:Jessica Lynn
Post published:May 6, 2020
Post category:Addison's Disease Adrenoleukodystrophy

When this 20-year-old male patient was serving in the military, he came down with two severe medical issues: pneumonia and adrenal crisis, categorized by an issue with an adrenal hormone…

source: pixabay.com

Family Sues Prison Officials After “Deliberate Indifference” in Addison’s-Related Death

Post author:Patient Worthy Contributor
Post published:January 22, 2020
Post category:Addison’s Disease Rare Disease

By Rachel Whetstone from In The Cloud Copy Justin Stufflebean was 27 years old when he died after being taken to Missouri Western Reception, Diagnostic and Correctional Center (WRDCC). He…

source: pixabay.com

Service Dogs Can Make a Difference in the Lives of Those with Addison’s Disease

Post author:Patient Worthy Contributor
Post published:December 17, 2019
Post category:Addison’s Disease Rare Disease

By Caitlin Seida from In The Cloud Copy Medical alert dogs can give their companions a newfound sense of independence and freedom. Enter Bill, a golden retriever owned by Laura…

An Addison’s Disease Story: Multiple Rare Diagnoses Often Means a Longer Waiting Game

Post author:Trudy Horsting
Post published:June 27, 2019
Post category:Addison's Disease Central precocious puberty Congenital Adrenal Hyperplasia

Emily Dover This is Emily Dover's story. At birth- perfectly healthy newborn, smaller than her siblings (8 pounds) 1 week- was having trouble sleeping and began crying in pain 4…

GabiSanda / Pixabay

An Overview of Diagnosis and Treatment for Addison’s Disease

Post author:James Moore
Post published:May 30, 2019
Post category:Addison’s Disease

A story from apsense.com provides a brief overview of signs, symptoms, diagnosis, and treatment approaches for Addison's disease, a condition also known as primary adrenal insufficiency. It is characterized by…

source: pixabay.com

Addison’s Disease: A Primer – Symptoms, Diagnosis, and Treatment

Post author:Scott Carlson
Post published:May 28, 2019
Post category:Addison’s Disease

A publication at AP Sense outlines some important steps of the early identification and treatment of Addison's disease, a rare condition brought about by the body's underproduction of certain hormones.…

Researchers in Sweden Studied 116,330 Twins and This is What They Discovered About Autoimmune Diseases

Post author:Rose Duesterwald
Post published:April 1, 2019
Post category:Addison’s Disease Graves' Disease HashimotoÛªs thyroiditis

According to a recent article from EurekAlert!, researchers used data from the Swedish Twin Registry and found that most of the 7 diseases they were studying were inherited. The second finding…

paulbr75 / Pixabay

When Anorexia was Actually Addison’s Disease

Post author:Ellen Johnson
Post published:August 2, 2018
Post category:Addison’s Disease

A Missouri girl was diagnosed with Addison's disease after being first diagnosed with anorexia. Eventually she ended up in the hospital with headaches, vomiting and stroke-like symptoms. Addison's disease is…

Source: Pixabay

Blood Test Could Have Saved the Life of a Boy With Addison’s Disease

Post author:James Moore
Post published:May 16, 2018
Post category:Addison’s Disease

According to a story from the Hereford Times, a combination of misdiagnosis and a critical mistake to forgo a simple blood test led to the tragic death of Callum Cartlidge.…

Source: Pixabay

A New QR-Code System Will Improve Emergency Care for Patients With Addison’s Disease

Post author:Anna Hewitt
Post published:April 25, 2018
Post category:Addison’s Disease

Researchers from Newcastle University in the UK have just developed a potentially life-saving device for patients with Addison’s disease, reports Newcastle University. Patients will be given a Quick Response (QR)…

Source: Pixabay

27-Year-Old Shares Living With Addison’s Disease

Post author:Meagan Fulps
Post published:March 6, 2018
Post category:Addison's Disease Rare Disease

Life for 27-year-old Medical Bio Science graduate, Tate Nova Scanlon, has never been easy. As originally reported by The Lincolnite, Tate has been battling aggressive symptoms caused by adrenal…

Source: Pixabay

“The Crown” Season 2 Delves into JFK’s Health Secrets

Post author:Andres Rovira
Post published:December 8, 2017
Post category:Addison's Disease

The highly anticipated Season 2 of "The Crown" hit Netflix today and with it, a new chapter of political intrigue, elegant royalty and... a drug addicted JFK? Say what? It's…

ICYMI: Help this Mother Raise Money for 5-Year-Old Daughter’s Menopause

Post author:PW Blogger
Post published:November 6, 2017
Post category:Addison's Disease Central precocious puberty Rare Disease

Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…

Source: Pixabay

You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease

Post author:Andres Rovira
Post published:October 19, 2017
Post category:Addison's Disease

A young girl from Australia had her period when she was 4-years-old. According to Independent, young Emily Dover is well on her way to experiencing menopause at the young age…

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Nothing About Addison’s Disease is Simple, Here’s Why

Post author:Erica Zahn
Post published:June 9, 2017
Post category:Addison's Disease Rare Disease

People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…

Managing a Dual Diagnosis: How Sarah has Survived, and Overcome, Challenges from Addison’s Disease and Stiff Person Syndrome (Pt. 2)

Managing a Dual Diagnosis: How Sarah Has Survived, and Overcome, Challenges from Addison’s Disease and Stiff Person Syndrome (Pt. 1)

How “My Rare ID” Supports the Rare Disease Community: An Interview with Jeff Lord (Pt. 1)

NORD’s Living Rare, Living Stronger Forum: From Bitter to Better

Rare Classroom: Addison’s Disease

From Healthy to Zebra to Unicorn

Researchers Identify 9 Genes That Increase Addison’s Disease Risk

Living With An Invisible Illness: Patients’ Stories

ICYMI: Addison’s Disease: Emergency Cards Issued to Patients with Adrenal Crisis Risk

UK Patients with Addison’s Disease Will be Given Steroid Emergency Card

New Gene Mutation For Adrenoleukodystrophy Found: A Case Study

Family Sues Prison Officials After “Deliberate Indifference” in Addison’s-Related Death

Service Dogs Can Make a Difference in the Lives of Those with Addison’s Disease

An Addison’s Disease Story: Multiple Rare Diagnoses Often Means a Longer Waiting Game

An Overview of Diagnosis and Treatment for Addison’s Disease

Addison’s Disease: A Primer – Symptoms, Diagnosis, and Treatment

Researchers in Sweden Studied 116,330 Twins and This is What They Discovered About Autoimmune Diseases

When Anorexia was Actually Addison’s Disease

Blood Test Could Have Saved the Life of a Boy With Addison’s Disease

A New QR-Code System Will Improve Emergency Care for Patients With Addison’s Disease

27-Year-Old Shares Living With Addison’s Disease

“The Crown” Season 2 Delves into JFK’s Health Secrets

ICYMI: Help this Mother Raise Money for 5-Year-Old Daughter’s Menopause

You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease

Nothing About Addison’s Disease is Simple, Here’s Why

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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