Tra la la la la la la la la!
Our HMSA hoodies are sooooo comfy! Grab em’ in time for #Christmas. Either as a gift or for yourself 🙂
For me, this year has just flown by! I have started my shopping already (trying to pace and not do it all last minute)
I do struggle to say Merry Christmas everyone in November but here it is!
Shopping via Give as you live is very easy to do. If you have google chrome, you can download the Give as you live app and when you google for items it will tell you which online stores donate to our charity and at what percentage at no cost to you. Or you can simply follow the link at the bottom. It takes only a few minutes to sign up and you could be Xmas shopping and raising donations straight away!
Grant our simple wish of free donations by shopping at top retailers like Next, House of Fraser and Debenhams for your gifts via Give as you Live
This lovely video below tells you how it works 🙂
My Marfan Experience – Hypermobility #MarfanMonday
It’s Monday so that means it’s time for another Marfan Monday post where I talk about my personal experience with the condition. For this week’s post I talked to some of my friends who have Marfan as well and asked them about what they wanted people to talk about more when it comes to the characteristics and symptoms of the condition. Something that came up a lot is that people think that because of the big focus on the cardiology side of Marfan it means that the hypermobility element is hardly being talked about and recognised. So, today I thought I’d share my personal experience with having hypermobile joints, I think this is something that a lot of people (not just Marfan sufferers) will be able to relate to.
When I was younger, about primary school age, the first Marfan related problem I had was bendy knees. I was always sitting awkwardly and in weird positions which of course then led to being in more pain and that was my first memory of my condition causing me pain. Over the years it only continued as I grew up and I went in and out of physio, unfortunately we just never found the right person to help me though. Then I remember showing everyone the cool tricks I could do with my fingers and thumbs, bending them back and moving them around. I realise now that doing those things hasn’t done me any favours but as a child it was a fun thing to do.
As I grew older I found that more and more of my joints were hypermobile and problematic. I struggled to write at school as my wrists played up and would hurt because of the stress I was putting on my bendy joints. It wasn’t until I got into my late teens that I actually started suffering with subluxations and dislocations though. My toes dislocate the most often and my knees are always slipping around but it’s become part of daily life for me. Usually I can just pop my joints back in, keep them in place with a support and go about my day. I’m hoping physio will be able to help strengthen my muscles in the future though so I can avoid dislocations.
My Marfan Experience- Scoliosis #MarfanMonday
It’s Marfan Monday and to start off these posts again I thought I would introduce myself a little. I’m Shona and I’ve been volunteering with HMSA for a little while but recently I became their Marfan ambassador. I will be striving to make sure that Marfan is well addressed and I’m looking forward to being able to represent my condition and raise awareness. To kick things off I thought I would talk a little about my experience of scoliosis, one of the conditions that I have developed as a result of having Marfan syndrome.
My C shaped curve was spotted by my Mum in my early teens and thanks to information provided by places like HMSA we knew that it was a problem that could potentially develop so we went off to my local GP. Despite a lot of doctors not having a great knowledge of conditions like Marfan the particular one we saw knew enough to know that I definitely needed a referral to a spinal deformities surgeon to learn more about my curve. The first x-rays I had showed that my curve wasn’t too big and would only need monitoring as I grew older, it was assumed that I probably wouldn’t need any kind of intervention as they thought I had nearly finished most my growing.
However, by the time I had my next set of x-rays I was suffering with bad back pain. The scans showed that my curve had significantly progressed within a very short space of time and even to this day my doctors aren’t 100% sure why this happened, every case is so individual so there was no concrete answer. I was sent off for some MRI and CT scans and despite being told that I probably wouldn’t need any intervention, surgery was planned. I had my spinal fusion in December 2013, it’s coming up to 3 years since I had my surgery now. I found the surgery to be a lot harder than I had expected but at the same time I don’t really remember much of it, especially the worst parts. The pain was bad and the recovery was tough but in the end it did turn out to be the right course of action for myself. I did end up having a few complications which required a second smaller surgery but nearly 3 years on I can say that I’m glad that I made the decision to have my curve corrected, it was the right decision for me.
We are pleased to announce that Shona Cobb will be working with us as our official ‘HMSA Marfan Syndrome Ambassador’.
Many of you already know that Shona is volunteering with the HMSA and works very hard to raise awareness of Marfan syndome within the charity.
Shona will continue to do this vital work and be available to offer more support to our members who have Marfan syndrome. She will also be the driving force to ensuring that Marfan syndrome is addressed with equal importance in our work; something that we are aware can be an issue and she will represent Marfan syndrome at every level within the charity. Shonawill also help identify information and education gaps that we may need to provide or to improve on.
Most of you know that a few years back the HMSA agreed to provide support, information and membership access to people with Marfan syndrome. This was in direct response to people pointing out to the charity, that they too had ‘hypermobility related’ conditions and that they too needed the type of support that the HMSA traditionally offered people with Joint Hypermobility syndrome or Ehlers-Danlos syndrome- hypermobility type.
At the same time we opened our doors to all Ehlers-Danlos syndrome types, Osteogenesis Imperfecta, Stickler syndrome and PXE. The combined conditions are known as ‘hypermobility syndromes’ or heritable disorders of connective tissue.
The HMSA will be identifying new Ambassadors for all of the conditions we support; Joint Hypermobility syndrome, Ehlers-Danlos syndromes, Osteogenesis Imperfecta, Stickler syndrome and PXE,
The HMSA is looking forward to working more closely with Shona and I am sure she would welcome any feedback from other people with Marfan syndrome, whether a current member of the charity or not.
Donna Wicks (CEO)