Disclaimer: I am not pregnant nor do I intend to be pregnant for the foreseeable future. In the picture above, I have a cushion up my shirt. It’s just that having children is something I’ve always wanted. I used to say I’ll have kids one day in the same vague way that I’d express my desire to explore Japan or learn to kayak. I’ve got no date in mind, no strategy in place and little savings to fall back on. I just know that I want to be a mum at some point in the future and I’ve always taken it for granted that, when the time is right, I’ll be able to pop out a couple of healthy and happy kids. I should say at this point, as a gay woman, it was never going to be that easy, but I thought I could worry about the details later.
Then I was diagnosed with myasthenia gravis and yet another thing I had taken for granted became complicated.
Last week, when I visited my consultant, I decided to quiz him on a range of different life matters including pregnancy. Since then, I’ve also spoken to a couple of mothers with MG for Rare Disease Day case studies.
I had heard anecdotally through Myaware that, with a little bit of playing around with drugs, pregnancy isn’t too much of an issue for ladies with MG. Sure, the stress of labour can often trigger a relapse, but it’s not a particularly fun filled episode for any woman and what better reason to relapse than while giving life.
In my early panic about the condition, I’d picked up some misinformation about the potential of passing MG on to your children. That gravely concerned me. Could I really take the risk of giving a child this condition? It is difficult to cope with as a relatively secure, relatively sane, adult and I’m not sure how children and teens cope with the burden of ‘weird’ eyes, voice and speech.
Thankfully my consultant assured me that the chance of passing on MG is very unlikely. He clarified that you can pass on the rogue antibodies for a short amount of time, thus giving your child neonatal MG, but the babies are monitored closely and the symptoms pass quickly.
He then mentioned that there is a completely different condition which can be passed on – congenital myasthenic syndrome. But, it would require a gene fault from both parents and is not connected to MG. It is a genetic condition, rather than an autoimmune condition, that is often noticeable from birth and has similar symptoms to MG including obvious facial muscle weakness.
I also asked my consultant about medication during pregnancy after reading that aziathioprine is dangerous for babies. He encouraged me that, at present, staying on aziathioprine is what he recommends because coming off medication completely is dangerous for both mother and children. In the most clinical of terms, he did stress that birth defects are highly unlikely. Here’s hoping by the time I want to have children, I’ll be on reduced doses of medication or off them completely.
He mentioned a drug that he is keen on for pregnant women but at present it is unlikely to get the go ahead. It’s called Rituximab and can be given as an injection twice a year so the impact should be less on the foetus. However, the issue is cost – he estimated the treatment costs £5,000 a go.
After my appointment last week, I spoke to a couple of very brave women for Rare Disease Day coverage. Two of the three mentioned that aziathioprine can cause issues with fertility. This was the first time I had heard it and I was obviously not impressed after six months on the drug. My consultant had warned me about the cancer risks, which stopped me from using it for a few months due to the history of cancer in my family, but said nothing about fertility being affected.
Thankfully I don’t have long to wait until my next appointment to grill him as we are meeting in early March to discuss upping my Aziathioprine dose to the maximum. Before I give the go ahead for this, I will be looking at what has been written about aziathioprine and fertility. If you have read anything interesting (that sounds reliable) please do share it with me.
Also if you are a mother with MG, and would like to share your experience of pregnancy with the condition, I would love to run a guest blog on this so get in touch at firstname.lastname@example.org.