Myasthenia Gravis in and of itself is not a fatal condition. However, effects of this disease can be fatal if a correct diagnosis and correct treatment is not given. Even many medications can cause a Myasthenia crisis which can, in some cases, require life support systems and even cause death.
I was diagnosed with Myasthenia Gravis in March of 2016. I, as well as several others here in the RGV, had our Myasthenia Gravis incorrectly diagnosed by medical specialists as anything from optical problems to a bulging palette (drooping eyelid, double vision and slurred speech are often the most noticeable early onset symptoms).
I have personally been made aware that there are over 20 MG diagnosed patients being treated by only three of the neurologists here in the RGV.
There are several other neurologists who have MG diagnosed patients as well. Due to the HIPPA laws, it is not possible to contact individuals who have been properly diagnosed with MG to form a support group.
As with other diseases and conditions, support groups are very needed by those afflicted and the family members giving them the support and care so desperately needed.
Based on recent statistics, MG diagnosis went from 1 in 50,000 patients to 20 in 40,000 patients as more medical professionals, as well as the general public were made aware of Myasthenia Gravis.
As you can see by the latest statistics, only 1 in every 2,000 people have been correctly diagnosed. With over 1 million residents in the RGV, the average would indicate that there could be more than 500 people with Myasthenia Gravis correctly diagnosed if MG awareness could be published to the general public and medical professionals.
I was told by a physician that he knew little about Myasthenia Gravis (MG) as medical schools had given very little education about MG as it was considered a ‘rare condition.’ He said the
general public and medical professionals needed to be Myasthenia Gravis educated.
Myasthenia Gravis (MG) awareness is needed and would be most appreciated by patients AND THE FAMILIES of those currently diagnosed with MG, and most certainly by those who have not received a correct diagnosis, to be able to garner shared experiences in knowledge, support and treatments available.
A person who also lives in the RGV was correctly diagnosed outside the valley and is spearheading a Myasthenia Gravis support group with the help of several others of us, who also live in the RGV and had gone undiagnosed due to lack of Myasthenia Gravis knowledge here.
MGFA (Myasthenia Gravis Foundation of America) may be contacted pertaining to the status of the RGV support group as well as pertinent MG information.
Karen Mau, Harlingen