Thank you for visiting my personal awareness & fundraising page! You know the deal. I dislike doing this but the MGFA is the ONLY national volunteer health agency in the United States dedicated solely to myasthenia gravis. My neurologist is on their Board of Directors & keeps them in line. Last year you helped me raise $2,554! Think we can do better this year?! My goal to raise by the end of 2017 (fundraising can go past the walk day) is $3000. If you are curious about where your money is going… check out the MGFA financial reports and audits HERE!
MGFA is committed to finding a cure, improving treatment options, providing information and support to people with myasthenia gravis and closely related disorders through research, education, community programs, and advocacy.
The Tampa Bay MG walk will be on Saturday, March 11- more info CLICK HERE You do not need to attend the walk to donate!
Please help me reach my goal and spread awareness! If you can't pledge now, this page will be available year round to accept donations. Interested in other ways you can help?
To learn more about MG or the MGFA and the work they do, visit http://www.myasthenia.
Together We Can Make A Difference!
Personal MG rant… aka why I pester you about awareness and bother to put my personal medical information all over the internet...
I started typing this as my story, but mine is the same as so many- diagnosis took over a year… this round… if I look back I've actually had symptoms since the early 90's when I was in high school. Most of my doctors have no idea what they are doing in regard to MG and I am so grateful to have Dr. Weiss that actually knows what he is doing (even if I want him to do it faster sometimes!) I found Dr. Weiss through the MGFA website.
Myasthenia Gravis management is tricky. None of the meds used in treatment were designed for MG. A lot of these meds take weeks to months to kick in- after the weeks or months it took to find the right dosage. Many common medications such as antibiotics can cause rapidly severe & life threatening symptoms. This is in part why the MGFA supports research into new treatment options. The meds I currently take:
-Mestinon was designed for soldiers prior to exposure to nerve gas to increase survival. I need to take this pretty much around the clock. At times even waking up at 4am to keep myself from choking on my saliva as I sleep.
-IVIG (intravenous immunogobulin) was originally made for people with immune deficiencies. This is an IV infusion I receive every 3 weeks at my neurologist's office. I feel the effect start to wear off at about 2 weeks, and by 2.5 weeks I have to increase my mestinon dosage.
Last year I stopped taking:
-Prednisone. A common steroid that helps with immunosuppression but the side effects were too problematic for me to stay on long term. It was very difficult to come off of prednisone as it caused severe flares in my MG with each drop in dosage.
-Cellcept. An immunosuppressant designed for kidney transplants. I did not notice it helping my MG and had problems with it bothering my stomach. I had to wait until I was off prednisone before I could slowly come off the cellcept.
MG is an autoimmune form of Muscular Dystrophy. In MG, your voluntary muscles get weaker the more you use them. MG muscles can get so weak they literally stop functioning completely. Voluntary muscles are our arms, legs etc… but voluntary muscles are also chewing, swallowing, breathing… the Gravis in Myasthenia Gravis does stand for grave- for death. Choking and inability to breathe can cause death. People with MG can choke on their own saliva- even in their sleep. People with MG can go into a myasthenic crisis- at that point they need to be intubated and placed on a ventilator. The ventilator breathes for them until their muscles have rested enough/meds are sorted and their body can work independently again. If they are lucky. People sometimes don't make it to the hospital quick enough and also many doctors don't understand how fast someone with MG can stop breathing. Because these meds we borrow from other illnesses often get people to a point where they are mostly breathing, mostly eating and mostly managing daily tasks such as bathing- many doctors forget the gravis part of myasthenia. They forget giving us the wrong medication (often common antibiotics) can send us into crisis within minutes. As a rare disease there are not enough of us for pharmaceutical companies to make a profit. Most of us "don't look sick." Most of us learn to manage our energy so when you see us, we seem ok- cause you don't see the rest it took to get us dressed and out of the house or the rest we'll need once we get home. You don't see the nights where we can't brush our teeth cause we can't lift even an electric toothbrush.
If you read stories about MG and are inspired- be inspired to do something. Please don't just think about how you are happy it isn't you. Help spread awareness. Help the MGFA educate doctors. Help the MGFA educate people living with MG. Help the MGFA support research into treatments and possible cures. Help the MGFA provide support groups for MG.
Here I am, asking for help. I think I've decided my MG slogan is "Don't forget the G" as in don't forget the Gravis in Myasthenia Gravis. I have found amazing support online and I have been heartbroken repeatedly as I log in and find people are in crisis or have passed away. Stories from people begging their doctors for help- sometimes as they live in a remote area and specialists are not available. Other times they live in larger cities and still can't find proper care. I finally have a good doctor. I have amazing support systems. Help me use my experience and voice to speak up for those that are literally too weak to speak. Awareness of MG is key. Thank you for your help in spreading awareness and working towards a world without Myasthenia Gravis.