Profile

Name

Susann

Nickname

susann

Short Bio

I am a medical doctor who had to retire early due to health issues including MG

I am also a seronegative MG patient which according to my neurologist are some of the most severe patients to treat. I am stage IVb. I am homebound bc I am too weak to drive I am on oxygen 24/7 and have a non invasive ventilator which has kept me out of the hospital. I used to run marathons and loved exercising I can’t walk anymore without a rollader and if it is going to be more than 20 feet I have to use an electric scooter. The sun and heat are my enemy. I collapse and get short of breath if I get too hot. I miss the outdoors and exercising and my other autoimmune diseases are severe and I have complications from those diseases too plus I have many other health issues. The reason Vyvgart did not get approved for seronegative is because they didn’t have enough seronegatives in the study but they are trying to go back and study more seronegative patients and get approval eventually for seronegatives. This is what my Neurologist has told me and I have read this too

Year of birth

1970

Gender

Female

Location

Birmingham, AL

Relationship

Patient

How did you hear about us?

Other

How long have you or the person that you are caring for had MG?

12 years

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