Myasthenia Gravis didn't stop this determined nurse!

Stacy shared her journey in "MG Stories".

"Medical research has taught me that I’m both inquisitive and an advocate. I enjoy working with patients who feel like the medical system has historically been working against them. It’s my goal to help them understand that everyone is not out injure patients or make a name for themselves. The ultimate goal is to help make the world a better place than we found it. It’s okay to donate an organ or participate in a clinical trial. And without people being brave enough to try, there is truly no hope for helping others who seek help on their own journey down our path."

"Because I was never discouraged by my mom or told what I couldn’t do or be, it never occurred to me that I wouldn’t survive the first time the MG bell rang. I’ve learned to live my life in appreciation of those who helped me and those who did not survive. I do things that make me feel better – like exercising, staying hydrated, keeping my mind active, and protecting myself with masks and yearly vaccinations. I learned that nutrition matters, stopping the cycle of “Feeling tired --> drinking a soda/eating candy --> falling asleep --> feeling tired --> repeat.” I figured out which foods flare my myasthenia and what makes me feel better. I decided that I was important. I’ve lost a lot of weight and am no longer an insulin-dependent diabetic or requiring constant oxygen. It’s definitely taking me time to get used to the changes, but this is a good change." 

"I always say, “I don’t get frustrated – I get determined.” MG is sneaky and allows you fall into the trap of depression and hopelessness. Having a rare disease is not a ticket to wallow – it’s the opportunity to overcome. I was told I would never live a month, graduate high school, graduate college, walk without braces or use a wheelchair, drive a car, travel. I try to find a way around the limitations I know in order to live my best life. While there are some limitations MG and you don’t want to hurt yourself, YOU are your own best advocate and voice of how you feel." 

Read more about Stacy's journey at A Life with Myasthenia Gravis – A Nurse’s Perspective

Cheers!

Donna

Docs With Disabilities Initiative: An extensive resource for doctors, nurses and other healthcare professionals with disabilities!

 

This initiative is a collection of resources for doctors, nurses and other health care professionals with disabilities. 

"The Docs with Disabilities Initiative (DWDI) values diversity in all its forms and is committed to supporting the unique identities our team and community bring. To develop the next generation of medical and health science professionals, we believe in embracing justice, equity, diversity, and inclusion while ensuring intentional representation across race, ethnicity, gender identity, sexual orientation, socioeconomic status, language, culture, disability status, and more."

Resources include:

Research

Publications

Podcasts

Videos

Technical Standards 

(AIM) Access in Medicine

(AIN) Access in Nursing

Research Lab

And more....

* Join their email list to receive news and updates.

https://www.docswithdisabilities.org

#DocsWithDisabilities

Cheers!

Donna

Army veteran, Reggie Santiago, receives Daisy Award for being extraordinary nursing student

 

ECU News Services reported this story about Reggie Santiago.

"His second four-year enlistment ended with pride, but the transition back to civilian life wasn’t easy. Over the course of the next two years he held 11 jobs, including sales positions which he says he did well at, but life was starting to get the upper hand.

“I got into a major depression. My mom passed away and things weren’t going right. I wasn’t happy with my career, and it took my girlfriend at the time to kick me out. She said, ‘Look, you need to get your life together,’ Santiago remembered.

A chance meeting with a former Army friend got him back on track — a job training Special Operations medics awaited if he completed paramedic training, which instilled in Santiago the confidence to trust his academic abilities while relying on his military medical training.

“I was able to get into the vocational rehab program through the VA, which is how I wound up getting into nursing. I got my ADN through a paramedic to RN bridge course,” Santiago said.

And who doesn’t love a happy ending?"

Read more at:

https://news.ecu.edu/2024/05/15/army-veteran-honored-as-extraordinary-nursing-student/

Cheers!

Donna

A child with nephrotic syndrome grows up to become a nurse

 

Rarediseaseday.org reported this story. Grace is 23 years old and a registered nurse.

"I was diagnosed with nephrotic syndrome when I was 9, and have been in and out of remission ever since. This illness causes me to rapidly gain water weight to the point it stretches out my skin and I can barely walk. To treat it, I have been put on high doses of steroids, immunosuppressants, statins and several types of chemotherapy. These medications caused severe weight gain, frequent illnesses from low immunity, hair loss, acne, and more. When I was 15, I wrote a patient guide for newly diagnosed Nephrotic syndrome patients that was published by an international nonprofit dedicated to raising awareness for the disease. 

I also did a research project when I was 17. I surveyed patients from different countries on their side effects of the medications they had to take, and the effects of those side effects on their emotional health then presented the results at a symposium. 

I decided to become a nurse because I know what it’s like to be in the hospital for weeks at a time and suffer from the side effects of the many medications Nephrotic syndrome patients must take. Side effects are a whole other disease itself." 

From Nephrotic to Nurse - Rare Disease Day 2025

Cheers!

Donna

Shone’s complex, a congenital heart defect, didn't stop this PICU nurse!

    

UI Healthcare reported this story.

Margaret “Maggie” Behounek is a nurse in the Pediatric Intensive Care Unit (PICU) at University of Iowa Stead Family Children’s Hospital who connects with her patients and their families on a personal level. That’s because she was once a patient, too.

Immediately after Maggie was born, she was transferred to UI Stead Family Children’s Hospital where doctors discovered she had Shone’s complex, a congenital heart defect resulting in the narrowing of the aorta, which carries blood and nutrients to the rest of the body. Maggie had her first surgery at 11 months old to fix her aorta. 

All told, Maggie underwent five major surgeries to fix her congenital heart defect, and she expects she will need another surgery in the coming years to fix her pulmonary valve, which carries oxygen-poor blood to the lungs. Currently, the valve leaks blood during the time the valve should be closed.

“For my first surgery they fixed the coarctation—narrowing —and sent me home. I had a valve replacement when I was 4 years old, and I did okay with that for a while. And then when I was 7 years old, I had to get the valve replaced again,” Maggie says.

At 16, Maggie’s heart and liver were enlarged, causing heart failure and the need for emergency surgery to replace the aortic valve again. At 21, she had a prosthetic valve put in that should last 10 to 15 years.

“I still have chronic heart failure, which is pretty well controlled with meds. The humidity over the summer makes me feel pretty yucky, but I’m able to live a fairly normal life,” Maggie explains. 

Visit  https://uihc.org/childrens/patient-story/maggies-story-patient-nurse to read more about Maggie.

Cheers!

Donna