Myasthenia Gravis Has Made Planning for Motherhood Challenging

Myasthenia Gravis Has Made Planning for Motherhood Challenging
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Life with myasthenia gravis has taken some dramatic turns and created both challenges and opportunities. One of those dramatic moments was having to decide in my early 20s whether I want to have children.

Many medications I take have side effects. In previous columns, I discussed the side effects of cyclosporine and prednisone. I remember writing in the column about prednisone that we can anticipate the side effects of medications if we are educated about them. However, I realize now that this is not always true.

In my case, I was incredibly weak for a long time, and I was not responding to Imuran (azathioprine), an immunosuppressive antimetabolite. My quality of life diminished daily, so my neurologist decided to treat me with monthly cyclophosphamide infusions.

A side effect of cyclophosphamide, which also suppresses the immune system, is altered fertility. We didn’t have time to think about all of this when I first started the treatments, because we needed to get my single-breath count higher to avoid having to use a ventilator. Plus, I needed to get back to my university, which dominated my thoughts.

After 12 months of cyclophosphamide infusions, the side effects were becoming too severe, so we halted the treatment. For a while, my MG symptoms improved. This improvement was good enough to buy me a few months.

During this time, I wanted to freeze some egg cells, or at least the ones I had left. A few months without immunotherapy, despite my clinical condition slowly regressing as time passed, was all I needed to complete one cycle of retrieving eggs.

My fertility count was low going into the procedure, but it was my only shot because I knew more cyclophosphamide treatments awaited. Doctors usually recommend more than one cycle of harvesting to collect at least 10 viable egg cells to freeze.

After hormone therapy, doctors harvested six eggs. One was completely mutated due to my medical history, three were slightly immature, and two were perfect. So, I literally have a 50-50 chance of getting pregnant. I pay an annual fee to have those five babies-to-be frozen at a lab until I am ready to have children.

After the harvesting cycle finished, I started cyclophosphamide treatment again. Three years later, I haven’t checked my fertility levels again because I don’t have the heart to.

As I approach my 30s, I am experiencing what the internet ensures me is normal as I increasingly think about whether I want to have children.

In saying that, I’m really referring to how many children I want and when. I am a stubborn feminist who likes to pretend my motherly instincts are weak. But as I grow older, I am starting to realize that the thoughts I occasionally have about not wanting children are based on fear.

The reason I am terrified of admitting I want children is that I’m worried the frozen eggs might not be enough. I also am ashamed of wanting children because I need so much help myself. I fear having children because what if I don’t have enough energy to adequately care for them? What if the only thing my children remember about their mother is that she slept her life away? What if they think I don’t care about them?

I really want to be a mother. I understand this will be challenging, but I also know it is possible. I’ll continue to work on my guilt.

Finally, I have since realized that I won’t be raising a child alone. I have a support system that includes my amazing partner and incredible friends and family.

So, to my future baby, I cannot wait to meet you.

Life is beautiful, and I will never stop fighting for you.

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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.

I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.
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I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.

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