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Update 2026
Family Funday - Fundraising Event
Saturday 8th August
2-8pm
At the Lepton highlanders, Huddersfield West Yorkshire.
2025 Update
Here again... Planning and organising my next fundraising event on Saturday 2nd August 2025
More details to follow
2024 Update.
Another Event On the Saturday 10th August
From 2/3pm to 1am
Beaumont Arms.
Why I'm personally raising awearness of Facioscapulohumeral Muscular Dystrophy (FSHD-MD), and raising funds for Muscular Dystrophy UK (MDUK).
Charity Day for MD-UK & MNDA
I know this post needed to be done to raise the awerness but ive been putting it off so this a lengthy read & it is hard to try discribe everything . Any questions please ask. Let's raise awerness together... just because you can't see it doesn't make it less effective!!
Some may know & alot it will be new to people. People that have found out wouldn't have thought I have Facioscapulohumeral muscular dystrophy.
I am still learning about it myself moving forwards and there is more scientific terms about the genetics and chromosomes ect.. but I can't comprehend half of it. Links at the bottom & fundraising funding page.
WE ARE NOT ALL THE SAME THAT HAVE MUSCULAR DYSTROPHY AND IT EFFECTS EVERYONE WITH SIMILARITIES AND DIFFENCES.
Here we go!
Daily living...
Fatigue
Loss of energy and appetite
Mood Swings
Burning Pain
Aching muscles
Rib Pain
Shin/eblow splits
Lose of full function/movement and strength in Arms
Muscular loss and weakening in the core, legs, arms, shoulders, back, face
Struggle with clothing and hair
Lack of motivation or too much
Burst of energy that i will regret later
My hole body feeling like I've hit the gym too hard
Feeling lazy
Cramping muscles, hands and wrist pain
Struggle cutting and preparing food
Always cold or feel way to warm when over done it!
Sleeping problems
Well it for me started in 2016, where I become quite poorly. Where I experienced numbness, tingling and muscular aching. I'd woke up one night feeling paralysed down one side. Thinking it was just because I'd slept funny. After this I started to feel weak down my right side and started struggling with movement in my right arm. This lasted and got worse for about 2/3 weeks when i decided it was time to go to the doctors... they noticed my scapular was quite prominent and was baffled at why this had happened, as I'd not have any trauma to the area.
This is where all the tests started... and guessing games of what I'd got... nerve damge, nerve palsy, Parsonage Turner syndrome (brachial neuritis) ect. In this time it would of been around May-June 2017 and they sent me to physiotherapy, it didn't seem to be helping, when no changes happened she was baffled as to why it wasn't working and my scapular was becoming even more prominent. Also why I was losing more movement... after been referred to MANY doctors/specialist but still not getting any answers. Plus I was being referred and discharged without even been seen, no communication from anyone. Anotturning up to some.of Amy appointments and they didnt even have my notes. I was VERY angry, frustrated and in server pain. I'd started to notice my core also weakening, where i once used to be able to do sit ups and other excersises so easily became more of a struggle. The burning pains and the fatigue was and is just horrible and draining.
Through all this I'm trying to do my studies at university and working (USC) through it...
Things started to look up when I met Sam Vollans & his team at Leeds General, where he even tried to teach his students about my condition. This is where i started to fell listened to and knew I'd get the answers I needed. He understood my anger and that I'd been messed around so much.
After yet another EMG (this is where they insert a needle in to your muscles and get you to move the muscles and monitor them on this very very loud machine...
Finally, we are in August, i had to book a private appointment to see the neurology specialist (Dr Busby) as wasn't available until February the next year.. when I saw him he said he could tell by the way I walked into the room what I had before even stepping in the room .
I'd trip over thin air and was unbalanced from a childhood this is when I found out that this is called.
After Sam had previously already ask what I thought were silly question, Dr Busby
Asked me again.. can you whistle... no never been able to ... can you blow up a balloon... no never been able to... can you drink through a straw... yes I find it better to. Got me to do all the typical checks hand movements on the wall to see my winged scapular movement....
My final EMG, and diagnostics Blood Test to see if I did infact have the condition he was so sure I had Facioscapulohumeral muscular dystrophy... a progressive muscle-wasting condition. On the 8th* February 2019.. I got the call!!! THE test results have confirmed you have FSHD. I'd rang Sam to let him know. He had my scapulothoracic fusion booked in for the 15th of June!!!
I went to see Dr Busby... he confirmed again you have FSHD, explained that its progressive and there is no treatment or cure for what I have. He said I'd learn what I can and cannot do through time. He also said that there is a 50% chance I can pass it on to a child. Because my family as far as we know don't have the condition... I'm very special and I have the condition due to a spontaneous genetic change in my DNA.
JUNE arrived and I was going in for my right sholder operation that was hopefully going to relive some pain and help gain movement.
The scapulothoracic fusion took 4.5 hours, and team look good care of me (simple terms attaching the shoulder blade to the ribs). I EVENTUALLY after months, of pain and not been able to take my arm out of my sling. It was finally safe and fused. Recovery was long and then covid hit I'm trying to finish my degree still and going back to work . I had no choice. Then we are in lock down doing physiotherapy through email ... yeah that was not good for my body. I was posed as EXTREMELY VULNERABLE, so had to stay in the house I'd only just moved in too a month before!!!
The pains I was always feeling due to the condition and still recovering were just draining and I became quite isolated. I started to have sharp pains in my chest and my other shoulder was becoming more pain full. I was just hoping that it wouldn't be the same as the other side. Where I could only to lift my arm to like 20° with out assistance.
Finally out of lock down 2020...
After conferring with Sam... it was time to get my back on the list to get my left side done. Because of the back log, I had to keep pestering, after a date allocated... I was excited to try and look for a "normal ish" life but it got cancelled multiple times. November 2022 finally came, for my left side, I ended up also having a liliac bone graft to speed and better the fusion. I'm still recovering 2023 April and still have a long road ahead. Trying to look to the future but it's uncertain.
This, this is why I'm raising awerness! There needs to be more knowledge and treatments and a cure to be found!!!
I face new challenges daily and all I can do is try and MANAGE my condition!!!
Muscular Dystrophy UK is one of the chairtys that are trying to make a change for all the suffering from Muscular Dystrophys!!!!!!
If you've take the time to read this thank you. There is so much I could add and expand on but if you have any questions give me a message. Let's help raise awerness and funds!!!!
Links to more information.
Where the funding goes...
MDUK MY FUNDING PAGE
https://www.gofundme.com/f/kt6j3-lets-find-a-cure?utm_campaign=p_cf+share-flow-1&utm_content=undefined&utm_medium=copy_link&utm_source=customer&utm_term=undefined
Muscular Dystrophy UK
FSHD Muscular Dystrophy Support Living with FSHD
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Organizer
Daniela Armillei
Organizer
Muscular Dystrophy UK
Beneficiary