Chair-person - Traceyanne Pilato
I was diagnosed with FSH-MD when I was 13 but there had been signs for a number of years prior to that. After my diagnosis I joined the MDC and became an active member of our local MD group. I attended one of the first FSH Support Group meetings when I was in my early 20’s and have remained a member ever since. I am now 48 and a mother of two healthy sons. Over the past few years I’ve increased my involvement with both the MDC and the FSH-MD Support group. I’m am very pleased to be a part of the West Midland Muscle Group, working with the MDC to promote awareness of all aspects of living with a neuromuscular condition. For the past two years I have held the role of secretary for the FSH-MD Support Group UK. This has involved attending conferences in England, Scotland and Ireland as well as answering emails that come to the group from people in the UK and around the world. I also have a presence in most online FSH-MD communities and have made some lifelong friends. Although I am now in a wheelchair, I live a full and active life and never pass up an opportunity to try something new. As Chair-person I would hope to carry on the good work that has brought the group to where it is today.
I was diagnosed with FSH 30 years ago at the age of 11: the FSH is the result of a new genetic mutation as there is no other family history. I’ve been fortunate in that I’ve never dwelt too much on having this condition and have just got on with life. In the last 4 years I’ve needed to use a manual wheelchair; however, I’m still as active as ever…well kind of… life just requires more organisation and planning - skills I’ve yet to fully master!
I’ve worked as an Optician for 18 years in cental London managing several independant practices. With a view of a career change, I’ve just completed a BSc in Psychology; the plan is to go on to do some post-graduate studies when I find a suitcase full of cash.
As often as possible I attend my local south east coast muscle group meetings to keep up to date with the lastest campaign issues. My Father is a member of the Muscular Dystrophy lay research panel, the aim of which is to help allocate research funds. I’ve attended several support group meetings in the last few years and have met some fantastic people.
Secretary - Liz Williams
I was first diagnosed with FSH MD back in 2004 after burying my head in the sand for probably 10 years or so. I had been a Medical Secretary for 6 years before having my two sons, the diagnosis came when my eldest son was 2. It was a difficult time but I came to terms with the life I had lost in that perhaps my hypethetical goals had to change. Bringing up two children has its own challenges with or without FSH but the older they get the easier it is despite the deterioration in my condition. I use a wheelchair more and more and usually walk with a stick. I have found being in contact with the FSH community has really helped me, not only in terms of fantastic advice and support but I think has helped me to remain confident, while getting to grips with having to rely on other people more and more. I am very excited about my role as Secretary for the group and would like to take this opportunity to say a big Thank You to Shona Crump for her dedicated work over the past few years. I know lots of things have changed in the time I have been diagnosed and if it hadn’t been for the internet I don’t think I would be the person I am now. Over the past 10 years I have come into contact with some inspirational people who share this condition and I only hope I will be able to give something back to this organisation which has had such a big impact on my life, I hope our members old and new feel the same.
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Members’ Representative - Stacey Crabtree
I am 38 & live in South Devon. I was diagnosed with FSH at an early age of 6yrs old & am the first in my family to have it. I like to think of myself as fairly active although I am no longer able to walk but with an electric wheelchair, there’s no stopping me! Until 3yrs ago when I retired due to illness, I was a Practice Administrator at my local doctors’ surgery for 16yrs. I now keep myself busy with doing a shift every week at a charity shop, fundraising for a local MD Branch & I even did an interview last year for BBC Spotlight, promoting the South West Neuromuscular Network.
I found the FSH Support Group online 4 years ago when I was at a low point with my FSH & it really helped to chat with others going through what I was & it was a huge support & we would have a laugh too. I made some great friends & we get to meet up now & again.
I hope to make some contribution & provide support to the group from here in ‘sunny’ Devon!
Young Persons Representative - Emma Orme
Even just 5 years ago if you had told me I would now be studying for my A levels with high hopes of getting into one of the best universities in the country I would have laughed as my dreams were for something of an entirely different nature, however, following a ‘hard hitting’ appointment with a particularly ‘straight to the point’ FSH specialist I realised my dreams were not to be followed and I needed to rethink my career path and therefore I vowed to knuckle down with my imminent GCSE’S; this resulted in a lot of my ‘party’ friends and social circle not understanding my sudden eagerness to achieve high grades and go out less, this caused me to lose a large chunk of my friends and I became quite lonely and isolated but put my energy, time and sadness into studying to get a brighter future.
Skip forward 5 years to 2012 and I’m studying for my A levels and will be going to university in just a few months’ time; despite all of the odds I have achieved A grades which I was told would never be possible and was predicted ‘D’ grades throughout. I have recently passed my driving test and now live a relatively independent life style as a ‘normal’ teenager (whatever one of those is). I do not have a very large group of friends as I find doing what they do socially too, instead I have a small circle of friends and family who I am very lucky to have who fully understand my condition and support me.
I have recently been looking into universities and have been pleasantly surprised that universities actually DO cater for all needs which I did not believe until I saw it through my own eyes- I thought universities saying this was a falsely advertised idea to gain more students. In a few months’ time I plan to be living at university away from my childhood home and living a typical student lifestyle (beans on toast included!) Having had to reassess my dreams, think and plan many years ahead of my age for careers and future prospects I think I have become a well rounded individual and could be of assistance to somebody regarding any queries they may have surrounding the issues I have had to overcome physically and mentally. One of the hardest things I have had to deal with aside from the physical side of FSH is the mental side of the condition, not being able to do things you were once able to do is one of the most frustrating feelings in the world. I have found you just have to positively ‘retune’ your inner voice to tell you that you are amazing and can do anything instead of the negative things it is telling you.
I am a keen writer and on one of my particularly philosophical days I typed this little paragraph into the ‘notes’ section on my phone and I thought it would be fitting to share with you all:
Dear younger self,
Don’t waste time with idiots who hold you back, ignore the bullies – you’ll one day be way more successful. It’s okay to be mature and will be in your favour soon enough, sooner than YOU realise. It’s okay to be different and to stand out. The people you thought would be in your life forever won’t be, appreciate people now. The majority of people in this world are out for themselves, you’ll later learn it’s called ‘individualism’ and society created it (you learnt this in your sociology A level). You’ll never be a vet, nurse or entertainer but refocus your dreams, pay attention and work hard – you’re going to need your brains but it WILL all be okay in the end and as the old cliché saying goes: “it will all be okay in the end and if it’s not okay then it’s not the end” – trust me on this one.
I am a graphic designer living and working in London, I have my own company www.withdesign.co.uk and have worked for many high profile clients like Manchester United Football Club, Britvic Drinks, Vodafone and PCWorld. I play bass guitar, I also draw and paint. I love heavy music and would be lost without my iPhone. Apart from being a fairly dysfunctional adult, I also have FSH & use a wheelchair.