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…
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,…
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…
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.…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
I have been told that one of my first words spoken was "Why?" Ever inquisitive, I have always had a fascination with the how and why. As a child I…
Midnight in the Garden of Good and Evil with Addison’s disease Instills Compassion 12:00 a.m. I’m not kidding when I say it’s midnight, “in the garden of good and evil.”…
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