Myasthenia Gravis Patient Perspective: Our Clinical Trial Manager Thomas Grønnebæk caught up with Sofie
Sofie 26 yr. Nurse
When did you first start experiencing symptoms of Myasthenia Gravis?
The first time I experienced symptoms of Myasthenia Gravis was in December 2018. I was cycling and when I got off my bike my legs collapsed, and I fell on the sidewalk. The following week I experienced an incident where I was not able to comb my hair and one morning, I wasn’t able to swing my leg over my bike. That was when I contacted my GP to determine the issue. I was diagnosed with Myasthenia Gravis in early January 2019. I was 23 and it was right before I handed in my bachelor’s degree project.
What treatment have you received since your diagnosis?
Not long after I was diagnosed, I became pregnant. During my pregnancy, the only treatment I received was the acetylcholinesterase inhibitor Pyridostigmine. However, shortly after giving birth to my son I was admitted to hospital for 14 days and received plasmapheresis treatment which involves the removal, treatment, and return or exchange of blood plasma or components from and to the blood circulation to remove the disease-causing antibodies. Since then, I have been treated with the immunosuppressants Azathioprine, and the steroid Prednisolone, as well as with Pyridostigmine. In general, these drugs have a positive effect on my symptoms, but I still have problems with double vision and occasional muscle weakness and fatigue. I do get perioral dermatitis and clammy hands and feet which may be side effects of the medication I receive. These side effects impact my self-esteem in a negative way day-to-day.
Which symptom(s) is most troubling for you?
I would say that double vision is probably the worst symptom for me. For instance, double vision means that I cannot drive a car for longer than five minutes. In addition, as we have a car with manual gears, my legs get tired just shifting gears caused by muscle fatigue.
How has your diagnosis impacted your life and those around you?
I am currently studying to be a midwife on top of my degree in nursing. My Myasthenia Gravis and the limited help I have received from the University mean that I am not able to complete my studies.
My Myasthenia Gravis also means that there are things that we would like to do as family that are not possible. For instance, we would like to go on a family bike trip, but that is simply not possible as my muscles would get too tired. I have not ridden a normal bike since 2018. We have bought an e-bike so I can get around with my son, but I still have to lift him, carry the battery, lock my bike up etc., and even these actions cause fatigue. There are also social implications of my Myasthenia Gravis. I get tired in the evenings. In addition, when on rare occasions, I enjoy alcohol, it makes me very tired and effectively neutralizes the positive effects of my medication. My Myasthenia Gravis also means that it will be difficult for us to have more children.
What are some coping mechanisms you have implemented day-to-day to manage the condition?
It is very important that I get a good night’s sleep and that I have a quiet day but that can be difficult with a small child. Stress has a very negative impact on my symptoms. My husband is instrumental in making everything work on a day-to-day basis.
How has the Myasthenia Gravis community supported you and your family?
I am a member of a Myasthenia Gravis Facebook group which. I use to interact with other individuals with Myasthenia Gravis and to seek advice when new challenges arise. Being able to interact with other people living with Myasthenia Gravis has been very important to me.
What would be your advice for other individuals and their families who have just been diagnosed with Myasthenia Gravis?
Keep calm and lower expectations of yourself or members of your family that have been diagnosed with Myasthenia Gravis. I also think it is very important to talk openly about my Myasthenia Gravis. Being stubborn helps!
What more can be done to raise awareness of Myasthenia Gravis?
I am not sure what more can be done to increase awareness, but I do think that it is very important to increase awareness where and when possible. In my experience, a lack of awareness is a major problem and contributes to the stigmatization of the condition. I am often met with “but you are not in pain,” which is very frustrating as the hurdles I must overcome on a day-to-day may not be visible to all those around me.
What are your hopes for the future of the Myasthenia Gravis community?
I hope that in the future everyone with Myasthenia Gravis will be in a position to live their lives unrestrictedly. Personally, I hope that I will be able to work and that future medicines will have fewer side effects. I would also appreciate not having to take three different medicines to manage the condition.
Note: The patient wants to be anonymous and Sofie is used as pseudonym.