The MG story in pictures

Pictures tell a thousand words … hope you enjoy this little story  …

We're here in Provincetown, Cape Cod, on a mission ... for MG.

My Classic VW Camper catches the eye of tourists and I explain .. "We promoting awareness for a little known autoimmune disease called MG, that causes muscle weakness. Do you want to take a photo and tell your friends about this?

Myasthenia Gravis, or MG, often causes droopy eyelids and Carole's MG hippo is over here from England to help explain the disease to children who want to know more ...

This poster describing MG, mentions the droopy eyes. Other symptoms are blurred vision, difficulty chewing and swallowing, slurred speech, inability to smile, weakness in arms and legs. All skeletal muscles are affected to one degree or another by this neuromuscular disease.

MG is one of the least well known AUTO-IMMUNE diseases. Others that you will most likely know of are Diabetes (type I and 2), Rheumatoid Arthritis, Lupus, ALS (Lou Gehrig's disease) .. and the list goes on and on (so far almost 100 AI diseases have been listed - see http://aarda.org/ for more information) ...

The charities that support MG research have little funding and are not known by the public. The posters here are from the MGFA (Myasthenia Gravis Foundation of America - http://myasthenia.org/)

The poster on the left is from the MG Association of Kansas City (http://www.mgakc.org). They have a very talkative patient support group on Facebook at http://www.facebook.com/mgakc if you'd like to see what MG patients say about living with this disease

Please support our cause and put MG on the map, by sharing this album with your friends and inviting them to subscribe to this blog. Later this year we’ll be driving across America to promote awareness for MG and writing about it here. We hope you’ll keep in touch and send your comments.

To add your support, you can also ask your friends to ‘like’ our VW page on Facebook, called “The YesWeCan CamperVan”, which can be found at http://www.facebook.com/pages/The-YesWeCan-CamperVan/203679777444

SOME IMPORTANT LINKS (mentioned above):
Myasthenia Gravis Foundation of America – http://myasthenia.org
MG Association of Kansas City – http://www.mgakc.org
MG Association of Kansas City  FACEBOOK GROUP – http://www.facebook.com/mgakc
The American Autoimmune Related Diseases Association – http://aarda.org

THANK YOU for CARING and SHARING the word …. and in this case, the pictures 🙂

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THE REASON we will be driving across America in 2011

When I discovered the following important facts and statistics on AUTO IMMUNE DISEASES on the AARDA’s website, I simply had to share them with you. They show how very important it is that we spread the word about MG and other auto immune diseases.

Autoimmune Disease … is a major health problem

• The National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune disease and that the prevalence is rising.

• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.

• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years of age.

• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.

• Commonly used immunosuppressant treatments lead to devastating long-term side effects.

The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.

Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients. 

  … faces critical obstacles in diagnosis and treatment:

• Symptoms cross many specialties and can affect all body organs.

Medical education provides minimal learning about autoimmune disease.

• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.

• Initial symptoms are often intermittent and unspecific until the disease becomes acute.

• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.

  … surprising statistical comparisons with other disease groups

• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.

• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).

NIH research funding for AD in 2003 came to $591 MILLION. In comparison, cancer funding came to $6.1 BILLION; and heart and stroke, to $2.4 BILLION (source: NIH).

• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”

• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.

 With THANKS for these statistics from AARDA

the AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION Inc

 (http://www.aarda.org/autoimmune_statistics.php)

——————— END OF PUBLISHED STATISTICS ———————


COMMENTS BY CAROLE BROWN

  • I have put in bold the facts that struck me most. So few people know about, and so little money is spent on, autoimmune diseases, compared with cancer and heart disease. Yet AID (Auto immune disease) affects far more people.
  • My mother, Gladys, had MG (Myasthenia Gravis) which is an auto immune disease, for 51 of her 71 years. For this reason and because more people need to know about this and other AI diseases to help them get diagnosed more quickly, I am driving my vintage VW camper across America from Massachusetts to Oregon in late 2011 to draw attention to and ‘put MG on the map’.
  • Please help me spread the word by:
    LIKING the Facebook page for my 1971 VW, by clicking on its name The YesWeCan CamperVan

    SUBSCRIBING to this blog by going to the top right corner and entering your email address so you can receive new posts by mail

THANK YOU for reading, and if you SHARE this post, please COMMENT below to let us know, or COMMENT anyway! 🙂

Driving to draw attention to important causes like MG and other auto immune diseases

June is MG Awareness month

Myasthenia Gravis Awareness - A teal blue ribbon

Please tell all your friends that June is the official month for MG Awareness. Together let’s raise the visibility and compassion for people with this disease.

MG – Myasthenia Gravis – is a largely ‘invisible’ auto-immune disease because of the low level of awareness amongst medical professionals and the general public. I’m hoping to change that by using my ‘attention-getting’ vintage VW to attract attention to the cause of ‘putting MG on the map’.

If you’d like to find out how you can help, please email me at caroleiod@gmail.com or re-read the post A Cause for our New Year.

Two good sites about MG on the internet are:

MGFA – MG Foundation of America which supports research, medical education and patient care – http://www.myasthenia.org/

MGA – MG Association of Kansas City whose Facebook group is the largest support group for patients and their friends wherever they are located – website at http://www.mgakc.org and Facebook group at http://www.facebook.com/mgakc

If you know of other helpful websites, please add them in the comments box below.

Also please remember to keep telling your friends about this blog and our Facebook pages, so that we can get more supporters for this cause and partners for our coast to coast roadtrip for MG right across America later this year (https://yeswecanjourney.wordpress.com/2011/01/29/a-cause-for-our-new-year)