Karen K

Tampa Bay | The Weiss Guys

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?

  • Spread the word- share a link to this page via email blast, Facebook, twitter, instagram, snapchat or whatever the kids are using these days. When you share, people I don't know donate. Even more important to me- awareness is spread. Most doctors don't understand, know how to properly diagnose or treat Myasthenia, so awareness is really my biggest reason for doing this.
  • Start your own fundraising for a virtual walk registration or a walk near you!
  • Would your company be interested in being a walk sponsor? Local and National options are available! CLICK HERE for more info on sponsorship.
  • Would your workplace, congregation or organization be interested in fundraising? Remember fundraising can go on ALL YEAR at anytime that works for your organization.
  • If you can, donate blood/plasma or organize a blood donation day at your workplace/among your friends. One of the medications I receive is made from antibodies that are extracted from donated blood/plasma. It is called IVIG. It takes 1,000+ donations per batch to make IVIG. I receive 2.5 bottles every 21 days.
  • Want to help but unsure of what you could do? Contact me! Happy to discuss options or help you organize something.
  • Stay awesome. If you clicked on the link & are reading this far- you are probably an awesome person, so keep it up!

To learn more about MG or the MGFA and the work they do, visit http://www.myasthenia.org

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.



Raised: $3,765
Goal: $3,000
100 percent raised

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Rank:  
#18  National 
#1  Local

Thank you donors
Patti and Leo Kessel
Karen you are an inspiration to us every day with the bravery and can do attitude that you display every day.
Theodore Bluey
Hi Karen--You're a brave young woman...and strong beyond belief. I'm so happy to support you and the mg walk. Cheers--Ted
Nicole Kibert
In memory of Ajde & with all my love for Karen
Stephen J Coulter
We love you Karen! Steve & Patty
Marilyn and Art Geary : $100
Good Luck Karen. Grandpa and I are so proud of you!
Bayside Veterinary Specialists Bayside Veterianry Specialists : $100
Karen Rehn : $100
We love you Karen!
Arthur Geary : $100
Good luck K-2!
Michelle Fletcher
I love you very much!
Anonymous
Albert & Anita Kessel : $100
Sorry we are so late in contributing. We left our IPad at the Andersons and are not doing well using our phones to access the world wide web! Love you!
Nilufer Wilkins
Sherri Anderson : $100
Keep up the great work Karen! Love ~ Karter and Eric
Robin Fryer
Karen, your description on your page of MG and the challenges you face every day, are an inspiration to all. We are proud to be on your team. Love Rob and Margie Fryer
Susan Boikess
Peter Bauck : $50
Anonymous
Good luck in your fund raising
Danialle Dupree : $35
Cara Burgess
from Circuit BMX
Ona H Schmidt : $25
Happy to help!
Jana Miller : $25
Holly Munsie
Barry Shalinsky : $25
Katherine Glover : $25
Leah Booker : $20
Zalary Young
So very much love to you, Karen! <3
Carol Handley
Elizabeth Mitchell
The Weiss Guys
Jessica Simmerman - $3141 raised
Allan Weiss - $500 raised
Amanda Smolen - $0 raised
Ben Staley - $100 raised
Casey McMahon - $25 raised
Dorrie Staley - $100 raised
Dottie Strickland - $100 raised
Ella Gunst - $395 raised
Georgette Reed - $130 raised
Janice Smolen - $15 raised
Jerry Brown - $0 raised
Jerry Brown - $0 raised
Johanna Isdahl - $100 raised
Johannah Anderson - $0 raised
Karen K - $3765 raised
Kathy Diehl - $0 raised
Katie Smolen - $0 raised
Kelvin Simmerman - $50 raised
Kevin Clifford - $50 raised
Kevin Diehl - $0 raised
KIMBERLY QUEEN - $170 raised
Lakisha Kinsey - $0 raised
Martin Rosenberg - $250 raised
Max Wanniki - $0 raised
Minerve Casseus - $0 raised
Nicole Frost - $90 raised
Renie Mccanney - $20 raised
Ronald Book - $100 raised
Sharon Book - $0 raised
Suzanne Shinnick - $0 raised
Sydelle Rosenberg - $0 raised
Will Roberts - $0 raised
Winshelle Casseus - $0 raised

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