Myasthenia Awareness Month β€

Myasthenia Awareness Month – Show You Care, Do Your Bit

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Highlights:
  • Myasthenia gravis is a rare disorder that disrupts the normal functioning of the connection between voluntary muscle and its nerve (neuromuscular junction) with wide ranging clinical effects.
  • Myasthenia Gravis Awareness Month hopes to create awareness about this condition and raise funds for myasthenia research in search of a possible cure.
The Importance of Creating Myasthenia Awareness
Myasthenia Awareness Month – Show You Care, Do Your Bit

Myasthenia gravis (MG) causes weakness of voluntary muscles and can affect persons of any age or gender; the symptoms vary from person to person ranging from mild to severe.
  • Many persons remain unaware that they might be suffering from myasthenia.
  • Sadly, many physicians too are unaware of the various manifestations and often misdiagnose and wrongly treat the condition.
  • Importantly, certain drugs are contraindicated in patients with myasthenia and it is essential that a correct diagnosis is made to avoid possible fatal errors.
  • Though effective treatments are available to alleviate the symptoms, a small proportion of patients remain refractory to treatment.
  • Events such as Myasthenia Awareness hope to increase awareness about this rare condition, raise funds to promote myasthenia research and find better treatments and a possible cure in the future.
The necessity of creating awareness about rare disorders such as myasthenia gravis through all possible means cannot be overemphasized.

Possible Ways To Create Myasthenia Awareness

There are several ways to create awareness and the options are many, especially given the internet era and the power of social media. These include the following
  • Download the myasthenia gravis twibbon and use that to display your profile picture on social media. Check out the instructions from the website www.myasthenia.org
  • Post MG awareness posters and themes on social media such as Facebook. Wear a tee shirt with the myasthenia gravis twibbon.
  • The color of myasthenia is teal and many artefacts can be created using the teal theme to raise awareness and spread the message.
  • Organize myasthenia gravis awareness events in the local community be it the local school, supermarket, mall, or the park.
  • Join the sponsored MG walk to raise funds and show your solidarity.
  • Posters about myasthenia gravis can be displayed in prominent places such as parks, public libraries and shopping centers.
  • Encourage persons with myasthenia in the community to give talks sharing their experiences.
  • Community physicians and GPs can educate their staff and visiting patients about myasthenia by distributing information leaflets.
  • A function may be held to honor a member of the community who has made a significant contribution in the cause of myasthenia.
  • Local businesses may be urged to do their bit by displaying the MG logo on their site such as #MGStrong or #IhaveheardofMG or buy MG artefacts.
  • Do a write-up in the local newspaper about myasthenia gravis.
  • The local officials may be contacted to use their offices to raise awareness about myasthenia.
  • Contribute and collect donations towards myasthenia research
These are only some of the ways we can help. There are many other ways to help create awareness and reach out to as many persons as possible that would lead to faster diagnosis and treatment, and improve the quality of life of patients and families.

About Myasthenia Gravis

Myasthenia gravis is an uncommon autoimmune disorder affecting voluntary muscle. It is characterized by muscle weakness that becomes typically more intense with activity and is reduced by rest.

Common symptoms of myasthenia

  • Drooping eyelids (ptosis)
  • Blurred or double vision
  • Slurred speech
  • Difficulty in chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Breathing difficulties
Diagnosis is made by finding antibodies in the blood (acetylcholine receptor antibodies) that affect normal functioning of voluntary muscle. Diagnosis requires a high index of suspicion and awareness of the condition by the physician.

Treatments include medications and occasionally in refractory cases, surgery may help. Treatment modes are highly individualized.

Most patients are able to lead normal productive lives with treatment, but still a lot remains misunderstood. This is where events such as Myasthenia Gravis Awareness Month step in and work towards achieving as yet unfulfilled goals.

References:
  1. Treatment for MG - (http://www.myasthenia.org/WhatisMG/TreatmentforMG.aspx)
  2. Myasthenia Gravis Foundation of America 2017 PUBLIC ELATIONS TOOLKIT - (http://www.myasthenia.org/LinkClick.aspx?fileticket=w0XfToyWiVU%3D&tabid=40)


Source: Medindia

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