55/365- Happy Rare Disease day

The day has come – Friday the 28th is international Rare Disease day and people all over the world are meeting to discuss, fundraise and raise awareness about conditions like myasthenia gravis.

Today, it’s going to be difficult for me to engage in any of the events as I’m going to be working from home and then flying to Copenhagen for my birthday weekend. However, I’ll be looking for ways to raise awareness online. I also shared my story on the Rare Disease homepage, which you can do to. I’m just waiting to see if it gets approved.

I’ve tried to do my bit through this blog and also by sending a couple of stories to national and local press about people living with myasthenia gravis. Sadly, there has been no pick up so far but I’m hoping we will still be able to get the stories printed without the rare disease angle. These women are not only inspirational but their stories would raise awareness about the younger generation of people with myasthenia gravis. They have also been very brave in sharing their stories with me and I want to do them justice by getting them printed.

Lessons learned

I’ve learned a few valuable lessons about the way to approach getting media coverage in future.

Time: Although I am a qualified journalist, I forgot the amount of time required to get stories into the press. I also didn’t give myself enough time to chase them up properly, which is what I often needed as a reporter to get a story in print. 

Content: I wrote the women’s stories as articles rather than press releases because that’s what I’m familiar with. However, I forgot what it’s like to work in a manic newsroom – press releases are easy to deal with as you are used to turning them into stories. Pre-written articles are no doubt more problematic. I thought I was making it easier but in fact I’ve probably just confused them.

Support: As my new job is ramping up, I was very short on time to write and send the stories out to the media. This is when I should have asked for support from Myaware. Instead, I’ve asked for it too late. I’m hoping I’ll be able to get the staff there to help turn these stories into press releases and get them some well deserved coverage. 

Anyway, they are all valuable lessons to learn and hopefully it’ll be easier to get press coverage in future. 

Happy Rare Disease day everybody – let me know in the comments if you are celebrating!

40/365 – Vanity and myasthenia gravis

Today I sent off my article drafts for Rare Disease Day to the women I had written about, bar one as I’m still drafting it (Amy yours is coming soon). It surprised me that these wonderful women, one thirty- something and one forty-something, are guilty of being too hard on themselves. They battle their myasthenia with courage and humour, but described their frustration, about the havoc myasthenia gravis plays on their appearance, as vanity. Three generations of women are being unjustly tough on themselves.

Let me explain – when I did the interviews for these articles a couple of weeks ago, they were both embarrassed to tell me that the thing they find hardest about having MG is how it affects their physical appearance. One of them hates her MG smile and the other hated the droopy eyelids.

Vanity as a sin
Women are brought up in this country to believe vanity is the worse of all sins, while, at the same time, we are judged on our looks frequently. I know men are increasingly being judged in this way too, but I believe it to be aimed more consistently at women.

As I write this, I just read the latest ‘story’ in a long line about an older actress ageing – the beautiful Uma Thurman was the victim of the trash talk on this occasion. I struggle to recall a male equivalent of this kind of media abuse.

As children, we are told not to look at ourselves for too long in the mirror, yet from that time onwards our appearance is often the first thing people comment on or criticise. Sadly, other women, of all generations, are often our harshest critics.

Lack of empathy
One of the lovely ladies I interviewed told me that people had absolutely no qualms asking her ‘oh my god, what’s wrong with your eyes’ and ‘why do you look like that?’. Sensitivity and tact often go out of the window when it comes to women and appearances – so imagine yourself in that situation and tell me you wouldn’t prefer to have internal symptoms rather than external. Because they are easier to hide, they can be easier to forget.

The thing is people stare when something catches their attention/ doesn’t look normal – even in polite London eyes linger that bit too long. On a good day, you still notice this because it’s a direct challenge…why do you look different?

This attention reminds you of the temporary deformity and, in turn, makes you less likely to want to be around people you don’t know and trust. Outward symptoms make you turn inward to hide. So a confident, outgoing, person who knows their value in the world can start to doubt themselves and all they have is hope that the symptoms will pass soon.

I probably pay closer attention to how I look in the mirror now than ever before, but it’s not vanity that drives me. It’s a way of tracking how bad my symptoms are, because on days where my eyes look close to normal, I know everything will be easier. Today was better and I found posing for this photo less difficult.

One of #myasthenia Twitter gang posted the below picture a few days ago and I think it speaks for itself about the impact of the drugs we need to take on our bodies.

Women, with or without MG, can we do ourselves a favour? Unless we reclaim the word as a positive thing, can we stop referring to ourselves as vain like we have just admitted adultery or theft? And women with MG, can we stop misusing this word? We aren’t vain – we are grieving.

32/365 – Pregnancy and myasthenia gravis

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 laurnacr@hotmail.co.uk.