Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community

By

Taylor Kane

Feb 12, 2021 • 2 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Stephen's doctors suggested his early symptoms, including weakness, were caused by his weight, but an emergency room nurse suggested that his symptoms might be caused by myasthenia gravis. Stephen got blood work that confirmed that he did, in fact, have the condition.

“I tell them that it’s called a ‘snowflake disease,’ because every single flake is different,” Stephen explains, when asked how he describes his rare condition, myasthenia gravis, to his friends and family.

Myasthenia gravis is a neuromuscular disease, which causes a variety of symptoms such as muscle weakness, double vision, difficulties with speech and more. Like snowflakes, all patients with myasthenia gravis experience the disease somewhat differently.

Upon receiving his diagnosis, Stephen’s first thought was: “What did I do to deserve this?” Even now, over a year later, he admits he still wonders this from time to time.

To cope with his diagnosis, Stephen turned to myasthenia gravis Facebook support groups. He also started his own group, Myasthenia Gravis Unhinged for patients and caregivers to share their accomplishments.

“You can post you did yard work and had a good day and were fine, or you were feeling down in the dumps for a couple days but now you’re up and moving,” Stephen explains. He believes positive posts like these are much-needed in the myasthenia gravis community.

He is a strong believer in the importance of connection among the patient community, and appreciates that social media makes this process easier. “I like to try to help people as much as I can,” he explains. He also says that this is one of the reasons he joined the AllStripes Ambassador program and the AllStripes MG research program to advance treatments.

While Stephen’s virtual community has grown, his in-person social life has suffered since his diagnosis. Myasthenia gravis causes patients to be immunocompromised, placing them in a high-risk category for COVID-19. For the past year, Stephen says he spent most of his time at home, only going outside occasionally. He also has to be careful when going outside because his condition makes him sensitive to the heat and cold.

These aren’t the only reasons why Stephen has struggled since his diagnosis. He says that when he would attend functions (pre-pandemic), people would worry his condition was contagious. He wishes people understood that myasthenia gravis is not a contagious disease, and is passed down through families.

Stephen sees his rare disease journey as an ongoing story that has no end, and encourages others with the condition to be informed and get involved.

We know that every person's story is unique and deserves to be heard.

Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.