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 hypothetical 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 Chairperson for the group and would like to take this opportunity to say a big Thank You to Traceyanne Pilato 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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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.
I was diagnosed over twenty five years ago and like many others had never heard of FSH-MD so it was a great relief when I found my way to this group. Way back then there weren’t that many of us, but over the years the group has evolved and grown, and is usually the first point of call to those newly diagnosed or those seeking information and support. It’s also thanks to this group that I have made many close friends who have always been there when support was needed.
I’m a founder of NMC Midlands based in Coventry which is only the second neuromuscular centre in the UK offering specialised physiotherapy and support to people with Muscular Dystrophy. Also as one of the original chairs of the West Midlands Muscle Group and a member of the Patient Participation Group for Respiratory Services at Heartlands Hospital, and a member of Birmingham Community Healthcare NHS Trust. I’m well aware of the need for improved services and support when living and coping with FSH-MD on a daily basis and the strain that this often puts on families and relationships.
I feel very honoured to have been invited back to serve on the new Committee as Treasurer, and I look forward to meeting many more new friends and sharing our experiences of living with FSH-MD.
Secretary ~ Gill Penny
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 50 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.
I held the role of secretary for the FSH-MD Support Group UK for a number of years before taking on the role of Chair-person. 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.
In September I decided to step down as Chair due to other commitments. I will however remain on the FSH Committee for the foreseeable future. I wish the new Chair-person all the very best.Although I am now in a wheelchair, I live a full and active life and never pass up an opportunity to try something new and hopefully now I will have more time to do just that
Members’ Representative ~ Michelle Goldthrite
Members’ Representative ~ Adam Crossman
So… I’m 25 I live in the Lake District I am an operations Engineer at BAE Systems Submarines where we design and Build the Astute Class and soon to be Trident replacement.
As for hobbies im very boring, I like to fly remote control helicopters, like to play computer games now and then. I used to be into fly fishing but with the shoulder restriction now I struggle to do it so I tend to fish sat down.
Also love music; I play guitar, ukulele, and mandolin. Would love to learn piano but one of my pointer fingers is going on my so I struggle to stretch it out.
Hoping to get out more now I got a manual wheelchair at the start of the year, its made such a difference to my quality of life wish I had done it earlier for anyone who’s worried about making the step ….. Just do it
Throughout the earlier years I received help from the group I wanted to give something back to the group or new people who require any help or support. Just don’t all come at once.
Young Persons Representative ~ Emma OrmeEven 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.