This week’s blog is written by Toni Abram, founder of The Information Point for Centronuclear and Myotubular Myopathy and The Big Sunflower Project.
Toni shares her personal rare story with Centronuclear Myopathy and introduces us to The Big Sunflower Project. Learn how the Big Sunflower project started below!
Photo credits: Toni and The Big Sunflower Project Instagram
Flowers can’t solve all problems but they’re a great start.
A father and daughter’s journey with centronuclear myopathy (CNM)
My father and I were diagnosed with centronuclear myopathy (CNM) in 1999 when he was 55 and I was 28. Neither of us had heard of the condition or had any idea what a myopathy was prior to our diagnosis.
Looking back on my own life, it does seem there may have been early signs of a problem. I was somewhere between 18 months and two years old before I learnt to walk. Everyone thought I was lazy and my mum says I used to go everywhere on my bottom, including up and down stairs like a little frog.
As I grew older, the doctors thought I had one leg longer than the other and at one point there was talk of me having a calliper.
Aged 18 I saw a doctor believing I had problems with my back, which turned out to be lordosis. He wanted to cut both my ankles open and lengthen the heel cords, a procedure that I now understand is called Tendo Achilles surgery. The thought of having both legs in plaster for at least six weeks and then having to learn to walk again, scared me immensely and I decided not to go down that route before getting a second opinion.
Around 1993, electrical tests revealed I had a mild muscle abnormality, that wasn’t a cause for concern but shortly afterwards, dad began to experience his own problems. He underwent a muscle biopsy, with a muscle sample being taken from his lower leg and the biopsy indicated he had a form of muscular dystrophy. Recognising that dad and I had similar symptoms, I requested a muscle biopsy also. I was told it was unlikely to provide any information but it was agreed to carry one out all the same. A muscle sample was taken from my upper left arm and the biopsy result showed all the classical features of centronuclear myopathy. When my biopsy was compared with my dad’s it could be seen they showed similar features. Today a keloid scar still marks the spot from where the muscle was taken.
In light of my biopsy both dad and I were diagnosed with centronuclear myopathy. At the time of diagnosis, I had seen three doctors over a period of ten years and my medical records show that nemaline rod myopathy and facioscapulohumeral muscular dystrophy (FSHMD) had both been considered before centronuclear myopathy was proven by the biopsy.
Receiving the diagnosis felt overwhelming and lonely – we were told there were very few others in the world with our illness, there was no treatment, no long-term prognosis could be provided and I was advised that if I were to have children, there was a 50% chance they would have the illness also, which I found devastating, as this is something I always saw myself doing.
Dad and I share symptoms in that while we are both ambulatory (although dad is increasingly less and less able to walk), we do not walk comfortably. Stairs can be particularly hard work and neither of us are able to use stairs without a handrail. Dad has a handrail on either side of the stairs at his house and when I visit, I find using the stairs there much easier but I have always resisted getting a second handrail at my home as I don’t want to get so reliant on something I know I can’t have in the outside world. These days taking the lift is dad’s only option and given the choice, I will always choose taking a lift over stairs.
Despite dad and I having the same condition, our stories are not following the same path. Dad really didn’t begin to show symptoms until in his early 50’s and he worked full time until 1999, when he retired on ill health. Dad has used a walking stick for many years and now has a scooter, walking frame, a wheelchair for when he is out and about and this year has had a stair lift installed at his home. He prefers to try and walk but it is clearly difficult for him. He suffers from muscle fatigue also.
Dad and I both know our condition is progressive, however, the rate at which this is occurring is hard to gauge – it’s looking back over time that the changes become clear rather than day to day. We are both aware that maybe our futures are not as rosy as some but at this moment in time our present is much rosier than many. In short, we are trying not to let the condition define us, whilst doing what we can to raise awareness, help with research and living each day to the best of our abilities.
The Big Sunflower Project seed is planted
Who doesn’t love sunflowers, with their cheery demeanour oozing positivity, even on the darkest days, standing tall and finding the sunlight? I love sunflowers and the way they grow to such dizzy heights, as if they are on a mission to touch the sky and nothing can hold them back.
In 2011, I decided I wanted to do something to celebrate the centronuclear and myotubular community that now existed. When I began The Big Sunflower Project, it occurred to me that many charity fundraising or awareness raising projects involved people doing something physical—being sponsored to run, swim, climb or bicycle, something that even I, although ambulatory, would not be keen to do.
However, popping a seed in a pot and nurturing it for a few weeks was something most people could do, whatever their physical ability and that was very appealing to me, because it meant that those diagnosed with centronuclear and myotubular myopathy could take part too.
The project has a lovely community feel, even though participants are located far and wide. A global community of sunflower growers. It is a particular delight when photos arrive over the UK winter from parts of the world enjoying their summer, then when summer reaches the UK, I have the pleasure of welcoming back those who have grown sunflowers with the project in the past and welcoming new growers too.
2022 is the twelfth year of The Big Sunflower Project and it has been a joy to watch not only my own sunflowers grow but the sunflowers of project participants too, with people joining in from across the:
Isle of Man
Sunflowers have been grown in gardens, on allotments, by schools, hospitals, community groups and even in a vineyard. It is the best feeling when the project reaches people who have never heard of centronuclear myopathy and they write to tell me so.
Each year the photos received are posted online which raises awareness of centronuclear and myotubular myopathy, and I hope the photos spread seeds of happiness wherever they are seen too.
This year, it feels as if growing sunflowers has an added importance also, as sunflowers are the national flower of Ukraine and if happiness is needed anywhere right now, it is there. So this year, my sunflowers will be grown for the people of Ukraine as well as to raise awareness of centronuclear and myotubular myopathy.
To all who have participated in the project since 2011 or supported it in some way, thank you so very much and I look forward to continuing to grow sunflowers with anyone who wants to join me for years to come!
‘Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world.’
How to take part
Grow a sunflower to raise awareness of centronuclear and myotubular myopathy this summer!
Taking part is easy:
1. Buy a packet of sunflower seeds
2. Plant a seed in a sunny spot, water regularly and watch it grow
3. Take a photo of your sunflower and share on your favourite social media platform using #TheBigSunflowerProject
Connect with Toni
Connect with Toni on the following websites and social platforms!
Personal website: https://a-little-bit-of-this.co.uk/
The Big Sunflower Project: thebigsunflowerproject.com