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This link lasts 11 minutes; you can turn it off but for a snowflake, it's impossible, so I ask: HAVE YOU HEARD OF MG?
Myasthnia Gravis Warriors are called Snowflakes. From the same family as Muscular Dystrophy (Jerry Lewis Labor Day Telethons) and ALS (Lou Genrig/Ice Bucket Challenge), it robs speech, breath, movement, sight, swallowing. Chemo/IVIG is made from plasma. You can donate plasma. MG kills. Less than 5000 known snowflakes, 8 died last month. The color is teal. The face is me. I am MG. https://youtu.be/IDH6btx62Oc
Myasthnia Gravis Warriors are called Snowflakes. From the same family as Muscular Dystrophy (Jerry Lewis Labor Day Telethons) and ALS (Lou Genrig/Ice Bucket Challenge), it robs speech, breath, movement, sight, swallowing. Chemo/IVIG is made from plasma. You can donate plasma. MG kills. Less than 5000 known snowflakes, 8 died last month. The color is teal. The face is me. I am MG. https://youtu.be/IDH6btx62Oc
Disability
Medical
Health
Edited 8 y ago
Posted 8 y ago
Responses: 9
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I realize very few military members can donate plasma because of our assignments and mandatory vacations to other parts in the world. But SP5 Christine Conley mentioned starting a plasma drive. I think it is an outstanding idea! Plasma saves so very many lives; it may have saved yours in the past! What an amazing way to give back! Can anyone make a phone call to find out how to do this? SFC Mark Merino Capt Tony Hudson Lt Col (Join to see) SFC Stephen King SFC William Farrell 1stSgt Mac Mastroni SrA Edward Vong Lt Col Stephen Jordan, COL Mae Goldmann Maj Rev. Fr. Samuel WATERS - Traditional RC Priest
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Maj Kim Patterson
SFC William Farrell , SP5 Christine Conley , Capt Tom Brown my son has given plasma a number of times. There are several private companies that pay for each donation, and donations can be made twice a week. According to him, it takes about the length of a DVD movie. I think the Red Cross focuses more on whole blood but I have been known to be wrong more than once.
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Capt Tom Brown
Maj Kim Patterson - The RC wants blood and plasma for direct use by patients. They do not freeze it or sell it to fractionators except if they have an oversupply of it , as per the lady here in Austin, which is very seldom...
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Capt Tom Brown
The American Red Cross will often send a van to your business for a blood drive. If anyone works for a business with enough employees to possibly support such a visit you can check with yr HR people about sponsoring one where you work. We did this when I worked for a state agency here in TX. The local Red Cross can tell you how many donors they need to sponsor a visit to your location..
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Let me clarify, the woman in the video is not me but demonstrates the symptoms vividly. I have been off RP because my symptoms became much worse than this. The good news is a miracle occurred and I am making a pretty significant comeback. If you are wondering how you can help, please spread the word. Thank the plasma donors you know. Donate to Myasthenia directly or to the bigger umbrella of muscular dystrophy. I did. This is a walk in my local area. Two weeks ago, walking was impossible. One week ago, I was able to dance. Today I can breathe, speak, swallow, walk and see movement and color. I can even drive again. It was a beautiful day and I thought to myself...what a wonderful world!
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SFC William Farrell
Its sounds like a terrible disease Maj Kim Patterson. I am glad you are doing better and I hope you continue to do so. I had to look up your illness as Ive never heard of it before. There is a website, http://www.myasthenia.org Good luck to you.
The Mission of the Myasthenia Gravis Foundation of America is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care.
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Maj Kim Patterson
SFC William Farrell thank you for taking the time to look up this terrible disease and also for posting so others may learn.
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Capt Tom Brown
SFC William Farrell - I had never heard of this disease either, which is as insidious as any other form of similar conditions, and much much worse than many others.
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Maj Kim Patterson
Capt Tom Brown - If I could reach through band width, I'd hug you, Thank you on behalf of my myasthenia warriors, few we be, but we are fighters. A single snowflake can melt but when snowflakes stick together, traffic can be stopped.
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Maj Kim Patterson
SP5 Mark Kuzinski - I have checked into participation. My goal is to ride a portion of the route. I have picked up a few handy skills, cattle eat out of my hand and I have been told I have a good seat while I ride.
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Maj Kim Patterson
SP5 Mark Kuzinski Capt Tom Brown I decided to volunteer for a free showing of Willie Wonka starring Gene Wilder. Blue skies when I went in, got my warning in the form of flooding and a lightening strike. The flood was up almost to my knees as I dove into the passenger door wearing a dress and wet heels (and a trashbag fashioned into rainwear) and the lightning missed me by about 4 car lengths and struck a railroad crossing, downed a line that sparked every time it hit the tracks. I didn't stick around to see what happened next. I know, you all are thinking I have all the fun!
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