Kids & Teens Exercise is important for young people with a hypermobility syndrome in order to keep the muscles as strong as possible and keep the joints in place. But it can also be difficult, especially when pain and fatigue are put into the mix. I try to keep my kids as active as possible, but there are times when we have to scale back activity and work on targeted physiotherapy exercises they have been given in order to get them back to their normal, especially following a growth spurt. Hannah has written a section on our website giving advice on exercise, where you can also find a handy film for parents and educators to look at. http://hypermobility.org/help-advice/kids-teens/pe-and-exercise/ There is also helpful advice on PE and exercise in our Educators guide http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/?ObjectPath=/Shops/78166025/Products/PUB002 Becki Social Media Assistant

Welcome to #HMSALiveOT

As you maybe aware, we have been talking a lot about pain management this month. This booklet is a great addition to anyone's self care toolkit. It provides practical knowledge an advice to enable you to be more knowledgeable yourself. The booklet itself is designed to look at the day to day living for anyone with of the heritable disorders of connective tissue. The HMSA recommends this guide for people with Hypermobility Spectrum Disorder (Joint Hypermobility Syndrome, Hypermobility Syndrome, BJHS), Ehlers-Danlos syndrome (all subtypes), Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome etc. You can find this booklet in our online shop by clicking the following link: http://bit.ly/2uU4R9r

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Anonymous Question: What do you do when work is getting too much? "I was dismissed as being an anxious patient even though visits to gp were few and far between because most tests came back negative and my symptoms too severe to be believed (!!) so I have been conditioned to accept the daily pain, fatigue etc as being normal. I was finally diagnosed with hEDS at age 48 (I'm now 50) and consultant referred me for specialist physio, which has helped to a degree. Work has made several adjustments and are very accommodating. Yet I still find myself exhausted and close to tears with pain during the working day in spite of all this. My daughter still lives at home for now and is a great practical help around the house, allowing me to rest when I get home, despite being quite symptomatic herself. She also works f.t. but ultimately I rely solely on my own salary. With very little relevant history with gp and no experience of the benefit system I'm frankly terrified of what my future holds. I can't afford to reduce hours but am struggling to maintain standards required of my position. I would never find a better environment for work so looking for alternative employment isn't really a viable solution. Any advice on laying groundwork for when the time comes that I need to apply for PIP etc?" HMSA answer: "This is a pretty complex area, and will be different for everyone. As someone who lost my career after lots of adjustments etc, I'll share some of the things that helped me/I wish I'd done. Hopefully others will be along to share the things that helped them too. [I'm sorry for such a long reply!] 1. Consider taking time off sick when fatigue and pain is bad. I know! This is easier said than done!! But actually, pushing on regardless just wears us out worsens the spiral. Work should not leave us crying in pain (I had to have a colleague point this out to me. Like you, it had become normal) My brother with hEDS has an agreed higher level of sickness absence which he uses to manage his hEDS symptoms before crashing - rather than pushing until he crashes - and is much more productive and less symptomatic as a result. Time off when needed also helps communicate what your real situation is - rather than what your 'coping mask' is showing. 2. See your GP and ask if they have any advice to help manage your pain and fatigue - explaining that they are interfering with your ability to do your job and look after yourself. Be prepared to discuss 'pacing', medications, exercise, what you've tried, what you currently do etc - the answer may be they can't suggest anything new, but you will at least have someone who knows how much you are struggling and can offer support. 3. Keep looking for tweaks that might help you at work - for me that included having a 20 min timer at my desk and getting up and moving every time it went off, and having permission to sleep in the first aid room every lunch break (unless there was a first aid emergency). 4. Have you been paying into a workplace pension? - if so, then medical retirement may be an option - find out what your pension rules are (for example, I was part time for a year or two before I retired because of my POTS and HSD, my pension was calculated on my full time salary, not my part time salary. Ill-health retirement has different rules to standard retirement) 5. PIP can be claimed whether or not you are working. If you are currently needing help with things, and struggling with looking after yourself, then I would strongly suggest looking at applying for PIP now. (Here's a useful link https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/how-decisions-are-made/, and http://www.fightback4justice.co.uk/ - there are various other places too.) - qualifying for a low level of PIP may mean part time becomes an option, or you could save it to help financially when you do leave work. 6. Don't resign due to ill health (unless other factors mean you have to). Resignation is seen as choosing to leave and will make it harder to access financial support (like ESA). However, if you are dismissed due to being on long term sick, or medically retired due to long term disability, then it is easier to access the relevant financial support.

From Genetic Alliance UK 'WHAT DO YOU THINK ABOUT CHANGE IN RARE DISEASE CARE, TREATMENT AND RESEARCH?' The UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) will be reporting on the progress made in delivering the 51 commitments in the Strategy in time for Rare Disease Day 2018. As part of the UK Rare Disease Forum’s work in monitoring progress, they want to hear from people living and working in the rare disease field. The Forum is gathering case studies that will help to showcase how changes in rare disease healthcare are affecting patients and families. If you, or a loved one, are affected by a rare condition and have received care and treatment for a rare condition, the UK Rare Disease Forum wants to hear from you. What was outstanding about you the care and treatment that you received? Are there any changes that could have improved your experience? Have there been any changes recently in your care or your experience? What should the next steps be? The key themes of the UK Strategy for Rare Diseases are: empowering those affected by rare diseases, identifying and preventing rare diseases, diagnosis and early intervention, coordination of care, and research. Do you have experiences to share in these areas? These questions might help you write your case study: – What’s changed? – How the change affect you? – What should have changed? – How would that change benefit you? – Do you feel the impact of the UK Strategy for Rare Diseases? How? If you work in rare diseases, are there innovative and creative approaches that you have taken to respond to the needs of patients and families? Was this linked to the UK Strategy for Rare Diseases? What, if anything, could have been improved to deliver better care and treatment? We will collect all submissions and share with the UK Rare Disease Forum, who will make the ultimate selection for the report. Please clearly state whether you would like your name attached to your case study, or with a description instead (such as ‘patient affected by cancer’). Please do not share information that you would not want to make publicly available. Genetic Alliance UK will retain your submission for use to support the Rare Disease UK campaign and our policy work. Submissions should be no more than 500 words and should be submitted by 15 September. Please send case studies to: casestudies@raredisease.org.uk.

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Often they find it difficult or impossible to access appropriate or affordable insurance cover. Many patients are not aware what insurance companies are allowed, or not allowed, to ask them, or what they need to tell them when applying for insurance. We want to hear patients' experiences of applying for insurance including any concerns and challenges faced. This information will help us update the resources available on our website to better meet the needs of the patient community. Please share with your members. You can find out more information and take part here. https://www.surveymonkey.com/r/genomics_and_insurance

***Giveaway time!*** You have until 8PM this Sunday the 20th August to write in the comments, 'Who would you give Zebbi to and why?' The winner will be picked at random to win the Zebbi bundle ad the winner will be announced next Monday the 21st at 5PM. Good luck everyone! We cannot wait to see your responses below :D

Blog post by Lara Compton on Pain Management I have hEDS, and despite having gained my diagnosis in 1999, it’s taken me a long time to get a grip on pain management, and I’ll be honest, I still don’t always get it right... But, part of effective pain management for me, has been to ensure I’m kinder to myself in all ways, particularly if I don’t make the correct decision at times! So, how do I manage my pain? Of course there are some pain killers in there, but they’ve never really worked too well, and I get awful side effects. Heat and ice work well, and you gradually learn along the way which is needed at what time. Taping can help loads – but I learnt the hard way that your body can become over-reliant on it. So now I try to only tape for part of a day, partly to give my skin a break too. If a joint hasn’t started to become more stable within a week or so, I’d start to rethink the tape. I have specialist massages with a lady who has lots of experience with hypermobility (although we still laugh about the first time she massaged me, and my shoulder subluxed afterwards!) This is one of the biggest pain relievers for me. Lastly... We move on to the biggest element of pain management in hEDS. Pacing. I’m still not a pacing expert (hence the incorrect decisions at times!) but now I’m finally pacing myself properly, I am so much happier. I am enjoying my life so much more. There are still bad days/weeks, but I know they’ll pass, providing I pace! I like The Spoon Theory a lot, but still think others find the concept hard. I recently wrote an article on The Mighty, where I described my pain levels like a bank overdraft. In a ideal world, I wouldn’t be into my overdraft at all, but most days I am. Some days, I wake up way over my overdraft. Pacing is all about decreasing your overdraft level. It is much better for me to stay at a constant 30% overdrawn, than to spike up and down, and end up 330% overdrawn. Life at 30% gives me a much better quality of life. You never know, one day, we might even end up out of that overdraft into positive figures! IS disclaimer: http://bit.ly/2vAPzbI

Everybody, take five, it's #RelaxationDay, you are ordered to relax, immediately with whatever you have to hand... combination suggestions and chilled multi-tasking are entirely permitted. At Ease! The social media team hustled this morning and our contributions are as follows: J-Bot likes to take five minutes outside and sneak in some breathing exercises, Blaadyblah enjoys cloud watching when weather permits, A Bendy Lady likes to nap and/or cuddle her furbaby, or if she's feeling more energetic got to her happy place, photography, while Hannah Ensor loves to colour and have fresh flowers in the house. Since relaxation is a key component of self management we'd hope most of you have a relaxation strategy/toolbox in your back pocket for moments when you can sneak in a little chill, so show us what you've got!

Marfan Monday It's been a busy 2 weeks for me! You might have noticed that there wasn't a Marfan Monday post last week, I was really quite poorly with Norovirus so I wasn't able to post but I'm back this week! I've been staying with family for the past 11 days, enjoying some time with my little nephew, Harry, especially. Being away from home means I have to manage my health a little differently though so I made sure to pack a lot of my pacing and flare up tools like KT tape and heat packs. Often staying with family means doing more fun things during the day so I always make sure that I prepare for this! Just the other night my big toe dislocated but I was prepared, strapping it up with KT tape to make sure that it didn't pop out again. Being prepared can make all the difference for trips like this! How do you prepare for days out, holiday's or activities? - Shona (HMSA Marfan Ambassador)

#CraftHour! The HMSA Charity need the crafty communities help. For our events we organise to raise awareness, we would like to have more bunting on display to really brighten things up. Do you have some spare material that you are not sure what to use it for? Handy with a sewing machine or by hand? We would love to receive some. You can post these to: HMSA 49 Greek St, London W1D 4EG - Thank you! :D On another note, how are your makes coming along this week? We are thoroughly enjoying seeing the progress of everything over the weeks - Kim