Well today my Mum reported a conversation to me which really set me off. Unfortunately it was while I was driving, probably not the best time, but don't worry, I didn't crash.
It seems the conversation had gone something like this:
Customer: Have you got any grandchildren?
Mum: No, not likely to have, my youngest isn't talking to me and my eldest is a pharmacist, but she has Turner's syndrome.
Customer: Oh, she must have a mild case then?
Mum: Well yes, she's in Mensa too. Are you a doctor?
Customer: Yes, I'm in paediatrics.
Oh - em - gee!!!
Where to start with this???
My reaction was "excuse me, because I'm a pharmacist my T.S. can't be that bad?". If I'd been there this "doctor" would have had some education!
Firstly yes, I am a pharmacist, and I also have a postgraduate diploma, and I'm in Mensa. So there. And do you know what? I know another T.S. girl in medical school, and two doctors, so don't tell me T.S. stops us achieving!
But also, on the flip side, just because I have achieved, and I'm maybe what she would call "normal" doesn't mean that I am not affected by my T.S., and need help, support and monitoring as and when required.
T.S. women can achieve anything that we set out to do, if we try hard enough and have the right support and people around us, encouraging us and helping us, not making barriers. It's the old, stupid attitudes like this, when we know no better and listen to them, which STOP us achieving, stop us trying, stop us wanting to try. NOT the T.S. itself.
And as for the mother not being a grandmother, I promise that any children I have through IVF (donor egg, embryo adoption) or adoption WILL be her grandchildren, just saying, she has to have that attitude too! Hopefully I can explain this to her, and how to explain and educate and raise awareness in situations like these! Also the fact that maybe she doesn't have to always talk about this to totally random strangers?
T.S. is T.S., you have it or you don't. I don't think being classic or mosaic, and your particular karyotype, actually impact which part of having T.S. you might have struggles with. We are all unique, like any other human being, with our own strengths and weaknesses.
Okay, that's it, battling back of "pity-face" comment achieved also! (You know, that pity face you get when you tell someone you can't have kids). Let's go spread awareness!
I have decided, for this week only as a one off (might be a stretch to do EVERY week) to link in my butterfly blog with my friend Considerer's 10 things of thankful. When you are diagnosed and have to live with a long-term health condition which may or may not cause you various problems, it can be very easy to become bogged down, challenged and just see the downside of it all. So for today I am finding 10 positive things about having Turner's syndrome, so here it goes!
1. Yes being short can be a pain. Yes I can't reach things in some stores. But being short makes you look sweet and cute, and people underestimate you (which can be useful, believe me!). Nice people offer, normally quite nicely and sensitively, to help you with things. You look younger than you are (I know I very naughtily got child fares on the buses a bit longer than I should have). So there are definite advantages! Most stores do short fittings/petite ranges now, and as my sister and a girl in my halls at uni would say 'you can take things up, I can't add bits of fabric to clothes!'.
2. Through having T.S. I have met many women, both online and in real life, who I would not have met if I did not have this condition. It is very hard to explain, but there is something which binds us, a shared understanding, and brilliant friendships have formed. It is a real sisterhood, and I wouldn't be without it.
3. Through my experiences I have been able to start this blog, and meet and talk to people who are just starting this journey themselves, or have a daughter who is. And I CAN HELP. At least I think I do. And they see me, having a normal life, doing okay, and they are reassured.
4. Now in the U.K. (other national organisations exist I know) we have the TSSS (Turner Syndrome Support Society). This is brilliant, and the support they give to women, girls and their families is amazing. Behind it all is the most amazing woman, who I WILL name as she can't get enough recognition, Arlene Smyth. Her daughter was diagnosed at birth, and since then she has been tirelessly devoted to raising awareness and doing all she can to help those with Turner's syndrome - go Arlene.
5. Thanks to the society, we have an annual conference. There are plenty of opportunities for fun, sharing stories, learning and bringing to fruition Arlene's whole ethos in starting the society - I quote her from last year "I didn't want my daughter to grow up thinking she was a freak". We are not alone! And conference is such a good place for tears, support and understanding.
Left to right - Alice, Debbie and Myself at last year's conference
6. Leading up to, and since, my diagnosis I have learnt A LOT of medicine (I didn't get in to medical school, but that's another story). I know what a bicuspid valve is. I know what a horseshoe kidney is. I know about growth hormone. I know about the various forms of HRT. I would not have such an understanding of a lot of this, despite being a pharmacist, if I did not have Turner's syndrome.
7. A lot of people find they have trouble conceiving. I forget the percentage of couples it is nowadays, but it is A LOT. Luckily, in my case, I don't have to go through months and months of trying. Of lots and lots of tests. Of lots and lots of waiting. I already know the options available to me and any future husband and what they will involve, which does sort of give me a head start.
8. Having Turner's syndrome I get annual blood tests. I get a bone scan every 5 years to check for osteoporosis. I get an echocardiogram every 3 years. I asked for a hearing test and got it. All this means I am monitored, and if any problem did develop, it would be likely caught very quickly, and resolved/treated - that's got to be good.
9. Butterflies are quite in vogue at the moment. And oh how me and all my sisters are enjoying it. I have, in no particular order, a handbag, a top, a couple of scarves now (one just given to me by the lovely Alice for my birthday), a photo frame (given to me by the lovely Debbie) and a picture above my bed. The latest addition is the following, bought for me by my mother:
Butterfly boot-planter!
No one seems to quite know how the butterfly became the T.S. adopted symbol, but now it JUST IS! Their fragility, their beauty, the way they fly - all of this contributes to it I think.
10. I am thankful for the timing of, and manner of, my diagnosis. That I am diagnosed at all. That I was diagnosed by another butterfly and had, and still have, her to turn to. That is worth so much.
Finally, I leave you with what is definitely an appropriate butterfly anthem, and hey, just a fab song!
