Addison’s Disease – Patient Worthy

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. 2)

Post author:Jessica Lynn
Post published:October 6, 2022
Post category:Addison's Disease Addison’s Disease Panhypopituitarism Timely

Before you continue, make sure you've read Part 1 of our interview, where we discussed the Lord family's story and experience with rare disease, and the development of MobiMedQR. This tool, which…

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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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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…

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Isturisa for Cushing’s Disease Raises Adrenal Insufficiency Risk

Post author:Jessica Lynn
Post published:July 20, 2021
Post category:Addison's Disease Addison’s Disease Cushing Disease

Even though some treatments are beneficial for patients, these same treatments can also cause adverse reactions. This seems to be the case for Isturisa (osilodrostat), according to Cushing's Disease News.…

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…

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…

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Jon’s Adrenoleukodystrophy Journey

Post author:Rebekah
Post published:July 30, 2018
Post category:Addison's Disease Addison’s Disease Adrenoleukodystrophy Rare Disease

I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…

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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…

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“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…

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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…

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This Woman Found Inspiration From an Olympian with Addison’s

Post author:Al Pendleton
Post published:May 15, 2017
Post category:Addison's Disease Rare Disease

Inspiration can be found in almost anything. Frequently, it’s a famous person from history who has overcome adversity to achieve some amazing feat. Sometimes it’s the busy person who finds…

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Trigger Events for Addison’s Disease Lurk All Around

Post author:Al Pendleton
Post published:April 11, 2017
Post category:Addison's Disease Rare Disease

For any number of reasons, we feel ill but decide that it's something innocuous. It might be that tickle in the back of your throat, causing those innocent little coughs…

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This April, You Can Learn the Latest in Endocrine Science!

Post author:Patient Worthy Contributor
Post published:February 24, 2017
Post category:Addison's Disease Cushing Disease Rare Disease

The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…

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The Hidden Truth of JFK’s Addison’s Disease

Post author:Erica Zahn
Post published:January 10, 2017
Post category:Addison's Disease Rare Disease

Anyone born before 1955 probably remembers exactly where they were when President John F. Kennedy (JFK) was shot. I've heard people reminisce about that moment right down to what they…

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What Google Can Teach You About Salt and Addison’s Disease

Post author:Sabina Kennedy
Post published:January 9, 2017
Post category:Addison's Disease Rare Disease

I don’t know about you, but on very cold days, which seems to be the norm these days (even in the South), I crave hot foods like a hearty soup…

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A Voice for Chronic Illness: Top Things to Avoid and to Do

Post author:Sabina Kennedy
Post published:December 15, 2016
Post category:Addison's Disease Rare Disease

I’ve been there. You’ve been there. We’ve all been there. And I’m thinking it’s a safe bet to say that we all hate it. We all know the feeling. When…

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What is it Like Living with Addison’s Disease?

Post author:Jennifer Walker
Post published:December 14, 2016
Post category:Addison's Disease Rare Disease

Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out…

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The Truth About Addison’s Disease and Useful Technology

Post author:Sabina Kennedy
Post published:December 12, 2016
Post category:Addison's Disease Rare Disease

Are you looking for an Addison’s disease community so you can share similar experiences and learn more together? If so, Circle of Moms hosted by Popsugar may have the online…

10 Shocking Symptoms of Addison’s Disease Will Save Your Life

Post author:Alisha Stone
Post published:November 4, 2016
Post category:Addison's Disease Rare Disease

I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…

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How Much Do You Know About Addison’s?

Post author:Erica Zahn
Post published:October 24, 2016
Post category:Addison's Disease Rare Disease

Addison's disease is another name for adrenal insufficiency -- meaning the adrenal glands don't produce enough of the hormone cortisol and frequently create insufficient levels of aldosterone. Cortisol is the…

Editor’s Choice: The Quest for a Cure

Post author:Patient Worthy Contributor
Post published:October 14, 2016
Post category:Acromegaly Addison's Disease Behçet's Castleman Disease Rare Disease

Welcome Back Patient Worthians! Acromegaly patients will be interested to see some new research happening in the name of rare disease. Speaking of research, there is a Castleman's event coming up…

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. 2)

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

Rare Classroom: Addison’s Disease

Isturisa for Cushing’s Disease Raises Adrenal Insufficiency Risk

New Gene Mutation For Adrenoleukodystrophy Found: A Case Study

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

Jon’s Adrenoleukodystrophy Journey

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

This Woman Found Inspiration From an Olympian with Addison’s

Trigger Events for Addison’s Disease Lurk All Around

This April, You Can Learn the Latest in Endocrine Science!

The Hidden Truth of JFK’s Addison’s Disease

What Google Can Teach You About Salt and Addison’s Disease

What is it Like Living with Addison’s Disease?

The Truth About Addison’s Disease and Useful Technology

10 Shocking Symptoms of Addison’s Disease Will Save Your Life

How Much Do You Know About Addison’s?

Editor’s Choice: The Quest for a Cure

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

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

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