February 28th is Rare Disease Day.
As Jacquelyne Froeber tells it
When I was 6 years old, I was running around outside with my friends when I felt my body go limp.
I collapsed like a rag doll next to a bright red fire hydrant with a matching stop sign looming above me. As my friends ran to get my mother, I used the fire hydrant to help me get up. I wasn’t going to let a little fall stop me from having fun.
The truth was that it wasn’t the first time my body just stopped working. I had no idea what was going on, but my mom knew I was having some problems so she took me to a health care provider (HCP).
At some point during the visit, a nurse led me into the hallway and gave me cookies and candy. I was thrilled, but when we went back into the room, tears were streaming down my mother’s cheeks.
The HCP said I had myasthenia gravis (MG) – a rare disease that was hard to tell and even harder to understand. There was a long list of things I couldn’t and shouldn’t do, like running around with my friends.
MG causes weakness in the muscles you can control — like your arms and legs — and physical activity makes the weakness worse. If left untreated, it could be life-threatening and affect my ability to breathe.
Because MG is a rare disease and is not usually diagnosed in children, the doctor didn’t know what to expect in the long term, but surgery to remove my thymus would stop the production of the antibodies that cause the muscle weakness.
I had the surgery, which was a huge benefit throughout my life, and I vowed to myself and my mother that I would try not to let this disease control my life. My family never gave me any limits on what I could and couldn’t do. And I didn’t want to limit myself either.
In the early stages of my diagnosis my doctors told my mother not to have children, but when I was 21 I became pregnant and was lucky enough to have a wonderful pregnancy. In 2008 I gave birth to a healthy baby boy. Shortly after he was born, I went back to college and completed the first of many degrees and certifications.
Tasha and her son, 2025 (Photo/912 Solutions Group)
For the most part, living with MG has had no impact on my daily life. But I was curious about the disease. The only other person I knew who had MG was my aunt, and she had more severe symptoms than me. She taught me everything I needed to know about MG and I’m so grateful she did. Although she lost her battle with MG due to complications from the disease, she overcame so much in her life.
In 2015, I searched for MG groups on Facebook and was surprised to find a few different options. I clicked on a group for women with MG, wrote an introduction about myself and logged out.
The next day I had more than 100 comments.
I was stunned. I was excited. I had posted that I enjoyed traveling and driving, and people wanted to know how I was able to do those things while living at MG.
I responded with words of encouragement – my advice was to live life to the fullest – whatever that might mean for that person. Overall, people were friendly and encouraging, but there were some people who said I was spreading “false hope.”
I had no idea that things would change very drastically for me.
A few weeks after post, my whole body felt heavy and I was tired, which was unusual for me. One morning I woke up and had double vision in one eye. My tongue tingled, causing me to slur my speech a little. That same morning, as I was handing my son a glass, it simply fell out of my hand.
After more than 20 years without symptoms and without medication for MG, I suffered from what is known as a MG crisis caused by increased stress. When I got to the emergency room, I checked in with the on-call doctor and he said I was having a stroke.
“I have myasthenia gravis,” I said slurred. I struggled to get the words out and quickly realized the doctor wasn’t listening. “Myasthenia gravis!” I screamed.
Luckily a nurse understood what I said.
“You are the second person I have met with myasthenia gravis in my 25 years as a nurse,” she told me.
I suddenly realized that I had a rare disease and there was a good chance that no one at the hospital or anywhere else knew how to help me. My mother was at home with my son. I was alone. And I was scared.
I was put on an IV with medication to stabilize my condition. Unfortunately, the treatment caused debilitating headaches. I wore my sunglasses in a dark room and cried. I was confused about what was happening to me and – after all these years – why it was happening at all.
2024
After five days in the hospital, my symptoms subsided and I went home. But I needed routine maintenance regimens of the drug, which resulted in more debilitating headaches, among other side effects.
For months, I tried to find an HCP who would listen to me and take my concerns about migraine attacks seriously. But I felt rejected – like what I had to say about my own health care didn’t matter.
Then one day, while seeking treatment, I reached my breaking point. I told the nurse to take the IV out – I was going home.
Apparently that was enough to get my doctor to change the medication. Unfortunately the next one didn’t help and shortly after the change I had another MG crisis.
I went to different HCPs for years and tried different treatments. In 2017, I finally found a specialist who took the time to listen to me and wanted to explore new treatment options.
For the first time in a long time I felt like I was seen. My doctor listened to me and made sure I was involved in my own healthcare.
That year, I went back to school and started my nonprofit, My Walk With MG (MWWMG), from my hospital bed. I wanted to provide information, awareness and support to the MG community. I also provide information packs and badges to show during a MG crisis. I thought back to my first hospital stay—when I was alone, scared, and unable to speak for myself—and hoped that these cards and information would help provide some peace of mind to others in crisis.
Tasha’s nonprofit, My Walk with MG, 2024
I went public with the nonprofit in 2019 and graduated in 2020.
I have been through a lot in the 30+ years I have lived in MG. I credit my faith, my son and my family for helping me get through the difficult times. Today I’m taking a routine treatment that doesn’t cause migraine attacks, and I hope to be able to avoid medication altogether – at least that’s my goal.
Right now, I’m grateful that I can do all the things I love – spending time with my son, driving, traveling and so much more. I will never stop living life to the fullest. My motto is: We only have one life, so live it without regrets.
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