Being a teenager is one of the huge whirlwinds of life and is complicated enough without our (what I like to call) “added extra’s.” Unfortunately, being a teenager and developing problems linked to our hypermobility seems to come as a package deal for a few of us.
The first thing that I think is super important for everyone to remember; is that you’re a teenager first. You’re a hypermobile teenager second. You are still a child, still someone trying to figure out what you want in life and who you want to be. When your life suddenly turns on its head, you change, and the way you see yourself changes too. It’s so important that the people around help you see that your still you, just with a few new “added extras.” You have to learn to shift your expectations and accept what limitations you have, but to never give up.
Years 9 – 10 seem to be the peak time of diagnosis for hypermobility syndrome, this can be difficult as secondary schools can be difficult to navigate and pose their own unique challenges. You feel different and not so much yourself as before, some schools tend to struggle to cater for accessibility needs, which can create the feeling of being a burden and feeling as if you stick out even more. I had to take routes outside in my wheelchair as their were stairs stepping up along the ground level of my school, in the winter you can see why this was especially hard and subsequently it took twice as long, sometimes leaving me late for lessons and creating more problems with me adjusting to this new situation. It’s also difficult having an illness that is hard to diagnose and for others to understand. Many people assume that you’re exaggerating as “they’re hypermobile” and manage just fine; hey they’re even better at some sports because of it! Hypermobility syndrome is an entirely different beast and something that only affects some of us, leaving people to make unfair assumptions.
You cannot always push through your illness, no one is trying harder than you, but sometimes the best thing you can do is to stop trying. The dreaded “pacing” I know! Some people may tell you you’re not trying hard enough or are being soft, it’s the hardest thing to hear when in fact you are doing the exact opposite and can make your condition worse by pushing through. I still remember being in school for a short period of time and a teacher telling me I ought to be back in school full time by now. I’m not joking either.
You must remember that you aren’t a burden, you aren’t an inconvenience and you are no more important, but certainly no less important than anybody else. One of the most important things is learning to have balance, the right amount of exercise, work, rest and most importantly, happiness and fun. You deserve, like everyone else, to have fun with your friends and enjoy some down time for yourself. One thing that became an option for me at the beginning of year 9 was to drop certain subjects, it’s a tough decision and not one you want to have to make, but there comes a time where you need to be able to enjoy a life outside of school. One option is to try looking at subjects that involve more coursework than exams. For me it was difficult at the time, but now sitting in year 11 revising for my GCSE’s I’m so glad I made the choices I did, I’m now planning on going to college next year instead of Sixth Form (something I never planned either) to study a two year course in photography. Your life is going to turn out differently, you are forced to take a different path, my GCSE results won’t look the same as my peers but those marks will mean more to me because of how much harder I had to work to get them.
Until I started experiencing more severe symptoms over the last two years I’d never have thought about photography being “my thing” but it is! You will find that due to certain limitations you find new passions born out of the hardest of times. My first photos for my GCSE course were taken during a difficult hospital stay; it’s funny what you might find out about yourself! College will offer me so much more than what I have now; they cater brilliantly to needs “outside the norm” and hold very little, to no, restrictions on what I am able to participate in. I didn’t want to consider other options outside what I thought I would do but once I did I found it was much better than trying to reclaim what I had missed. You can’t get those years you missed back, you have to look forward and at all the things you would never have done if it weren’t for your struggles.
Although it’s hard when people ask, and you really aren’t sure what’s wrong with yourself, know that there does come a time when you find charities and organisations like the HMSA, and are able to make sense of your body and why it is the way it is. Which brings me onto my next point; being listened to.
As teenagers we are expected to act like adults and treated like children, which seems to only intensify when you have a misunderstood illness, are speaking to doctors, who sometimes need to do a better job of listening as well as explaining. YOU are in your body and YOU deserve to be listened to as you and only you really know the way you’re feeling.
This time in your life can be really tough, especially when dealing with hypermobility syndrome on top of the teenage struggles. You’re still you, you can still have a wonderful time in this chapter, just remember its not the end of the story.
HMSA Youth Reporter
The HMSA works hard raising awareness of hypermobility syndromes among the general public, in our schools and workplaces, at conferences and along with our partner organisations help to refine the services that our patient community need to support them in managing their condition. Our online support resources and local groups are well known and our patient and family events incredibly popular, but we aim to support and educate the patient community and the health professionals working with them.
Dr Jane Simmonds will be hosting our next professionals only HMSA Physio Masterclass event on Friday the 31st March at The William Harvey Hospital, Postgrad Centre, Ashford, Kent, TN24 0LZ
It’s an excellent opportunity to learn more about effectively treating people with hypermobility syndromes, not to mention that our events are almost always a lot of fun too!
This event is strictly for health care professionals, book your place now in our webshop,
If you haven#t already, you may wish to make use of our Professional Membership scheme to keep up with the latest developments in the field and receive priority booking on future events.
HMSA Youth Patron, Hannah Ensor, is to become the HMSA’s Hypermobility Spectrum Disorder* Ambassador.
Hannah has worked closely with the Hypermobility Syndromes Association for a number of years and assists with raising the profile and awareness of Hypermobility Spectrum Disorder; the new name for hypermobility syndromes which are not covered by EDS, OI, Marfan, Stickler and PXE.
Hannah takes part in the HMSA’s self-management programmes and participates in our work with professional members as the ‘patient voice’. She is also well known for promoting the rights and needs of people with disabilities and is spending a second year as one of Britain’s 100 most influential people with a disability.
Hannah regularly fundraises for the charity and has a hugely successful business which has enjoyed global recognition, called Stickman Communications. You can view Hannah’s work on her website, stickmancommunications.co.uk
“I’m honoured to have been offered this exciting opportunity and am looking forward to helping further raise the profile of hypermobility spectrum disorders* – particularly highlighting the fact that the whole spectrum of conditions can range from mild to severe depending on how each individual is affected.
Over the past few years, as a Patron of the HMSA, I have seen an increased number of people taking hypermobility syndromes of all types more seriously -and I’m excited by the prospect of being able to help build further on this important work, among the general public as well as in the medical and patient communities.”
*Please see our HMSA statement of position on the 2017 International Criteria for Ehlers-Danlos syndromes which explains how our use of terminology has been, is and will be changing.
This document was prepared on Monday 20th February following requests from our members. It aims to address issues, and ease anxieties raised by the early and partial release of documents from the International Consortium and the FAQ that followed.
When the full nosology documents are released on March 15th a clearer picture will be available to everyone, in the meantime we’ve provided as much information and explanation as we’re able to. The HMSA stands for and with ALL people with hypermobility syndromes and will continue to do so.
Please note, for a printer friendly version, click the green ‘printer friendly’ icon, bottom left.
Click here for a pdf version, many thanks to our visually impaired members for their patience while our volunteer team made the necessary conversions
Throughout February I’ve been sharing my story and experience with Marfan Syndrome because as well as it being #HMSAware week and Rare Disease Day on the 28th, it is also Marfan Awareness month!
Over the past few Mondays I’ve covered everything from my diagnosis, childhood symptoms and finally my scoliosis journey. Today though, for my spot this week I’m going to be covering some of the lesser heard of and talked about secondary conditions and symptoms that I’ve experienced thanks to Marfan.
After my second spinal surgery I found myself experiencing pains in my both my hips, part of me thought it was just normal joint pain for me but something told me that there was more to it. So, off I went to the doctors where unfortunately the doctor just examined me a little and said my hips were normal, I knew something wasn’t right though and pushed for a referral to see someone at the same place where I had my spinal surgeries. I managed to luckily be referred to see someone, who had a good enough knowledge of Marfan, to see that my hips weren’t normal and x-ray’s confirmed this. I had a hip deformity called protusio acetabuli in both my hips. It has made my hip sockets too deep and this has led to wear and tear. I was told straight away that both hips would need replacing at some point but we hoped that was years away. Unfortunately CT and MRI scans showed that the problem were further along than first imagined though. My right hip was worse and I had only a thin layer of bone making up my socket so having a hip replacement was unavoidable and I was put on the waiting list immediately. I had the surgery when I was just 18, not an ideal situation as it will have to be re-replaced many times throughout my lifetime but it has solved my pain issues and improved my range of movement. My left hip isn’t as damaged so it seems that we can watch and wait with that one.
I then received a diagnosis last year that also complicates the situation with having another hip replacement though. After ongoing chronic back pain I finally found out what the cause was, a large tarlov cyst was found in my sacrum. Apparently it had come up on my scans before but was never regarded as an issue, hence I wasn’t told but it had grown and was starting to erode away my sacrum leaving me at risk of fractures, meaning that a hip replacement is mostly likely going to cause such fractures due to the force needed. Unfortunately it was decided that surgery is too risky for me to undergo to improve my pain though. I use a powerchair to get around now, both because of my back pain as well as other issues.
Leading on from that I think recognising and treating pain related problems in those with Marfan is something that really needs to be improved in the UK. In my experience not enough doctors recognise that there are many different secondary conditions that Marfan can cause that can both cause pain and even require surgery. For example, if I hadn’t pushed for a referral to a hip surgeon then I would have been walking around at risk of fracturing my hip. Whenever I see doctors and they know about Marfan often they only have a decent knowledge of the life threatening heart problems which is fair enough but it has meant that the other Marfan related problems have been neglected over the years. Often even the people I know think that my problems are just generalised pain, rather than connected to a specific problem that has either required surgery in the past or will require surgery in the future. It’s been a tough journey over these past 4 years and I have a lot more ahead of me including dealing with this cyst and the associated pain as well as the fact that I will be needing major open heart surgery in my early twenties most likely.
I make the best out of the situation though and love using my experiences to help support others, whether that be through my blog or through the HMSA as their official HMSA Marfan Ambassador! Being able to answer questions, aid in the diagnosis process or just educate and inform people is amazing and the connections I’ve made through it all keeps me smiling. Yes I might have had a few surgeries, yes I might be in chronic pain all the time and yes I do need heart surgery but, just being able to help one person can often make me forget all about that.
HMSA Marfan Ambassador.
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