Sunflowers bloom where hope grows: The Big Sunflower Project

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)

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.

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.

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:

Germany
Netherlands
France
Croatia
Hungary
Sweden
Austria
Lithuania
Greece
Poland

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.

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!