Why Raising Awareness for Myasthenia Gravis Is Important to Me

Retha De Wet avatar

by Retha De Wet |

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personality type, love, awareness, treatment

It’s difficult to explain to a 20-something in perfect health why raising rare disease awareness is important. However, I had just turned 20 when my entire life was turned upside down by a myasthenia gravis (MG) diagnosis.

Illness does not discriminate — anyone can be affected by it at any age. I had to learn that the hard way. That’s why raising MG awareness is so important to me. I want people to be prepared and to better understand why others are struggling. And I hope the world will be a little less intimidating and lonesome for the next young person diagnosed with MG.

I have seronegative myasthenia gravis. That basically means doctors can’t detect MG antibodies in my blood. I waited a long time to receive the correct referrals. It took even longer for doctors to actually believe me and acknowledge that my symptoms weren’t psychogenic. Unfortunately, I’ve found that many myasthenics struggle with getting the right diagnosis.

Based on my experiences in both international and local online support groups, many people with MG are first told, “It’s all in your head.” Personally, I started to believe that I was causing my symptoms. So many people had said that was the case that I believed it was true.

I believed I was causing myself to collapse in the middle of nowhere for no one to see, to fall in the shower with the water at an extremely high temperature without the ability to get up and turn it off, and to see a blurry version of what life has to offer, among other symptoms. I believed I was making myself sick.

That wasn’t the case, though. I wasn’t making up my symptoms. Although I was beginning to believe that my symptoms were caused by depression (my father had passed away when I was younger), that was not my truth. I wasn’t suffering from conversion disorder. I was suffering from MG. I had an illness with no known cause. It just happened, and it happened to me.

My eventual diagnosis was based on an irregular single fiber electromyography test, my clinical response to MG treatment, and my clinical presentation. The most important part of my diagnosis, however, was a knowledgeable neurologist. I found a doctor that was aware of and believed in the very real existence of seronegative MG.

Snowflakes are used to represent people with myasthenia gravis, because just as every snowflake is unique, each MG patient will have a unique presentation of symptoms. (Graphic by Retha de Wet)

If MG Awareness Month, which lasts throughout the month of June, results in just one doctor reading one article about MG, I will be satisfied. I strongly believe that MG advocacy should not only be directed at the general public, but also at medical professionals. I want people to experience an easier road to diagnosis so we can all fight together.

Never forget that life is beautiful.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Vi Dian G. Abalos avatar

Vi Dian G. Abalos

I'm very grateful to be part of the MG group because through readings of the different experiences, you can feel that you are not alone, you are being inspired by co MG patients in the world. Life is really beautiful Though I'm an MG patient life's goes on normally of course with God's grace, that He gave me a physician,my neurologist,who is very compassionate to her patients,Dra.Marita B. Dantes,NKTI Manila,who manages my health, she is following me up always😃👏😃

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Retha De Wet avatar

Retha De Wet

I'm so happy to hear you are being treated well! Thanks for reading!

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Ann S Herzog avatar

Ann S Herzog

Dear Retha,
So very well said!!!! It gave me goose bumps. I too am seronegative MG'er & family believes I make my symptoms worse around them. LOL.
Thank you so much for sharing.
Regards,
Ann S. Herzog RN,SCM

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Retha De Wet avatar

Retha De Wet

Thank you so much, I'm glad my words resonated with you. You are not alone! Keep fighting!

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Lovina Wolgamott avatar

Lovina Wolgamott

I read your article and I saw myself in it. I thought also everything was caused by stress. We had several deaths and I would catch myself belittled saying get it together. I was very fortunate I had a doctor that started putting my symptoms together and sent me to KU medical hospital for he treatment. I cannot understand everything you are going through because you are so young. I was 62 and still in physical therapy because of the weakness. I can say stay positive. Listen to your body rest when you need to. Thank you again

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Bonnie Cousineau avatar

Bonnie Cousineau

The right doctor made all the difference for me. My first neurologist told me I was “treatment resistant” so he couldn’t help me. The second breezily declared that by taking daily doses of Mestinon I would experience a miraculous recovery. That didn’t happen, of course. It wasn’t up until I went to The Cleveland Clinic and was treated by Dr. Ephraim Salgado that my MG was brought under control, After proper diagnostic tests and a series of drug treatments, I am currently virtually symptom free. I take small dose of CelCept which will tail off to zero one day. Dr. Salgado calls me “amazing” but it is he who has made all the difference.

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2021 Myasthenia Gravis Survey Results

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.