Latest News

Ironcause – fundraiser Keith Diaper’s final push this weekend!!!

Posted By HMSA Social Media Coordinator, September 22, 2017

Event 50 of 52 3515+ miles challenge miles covered just 140.6 to go! Good luck for the last remaining miles to go Keith! You are a superstar, thank you for everything you are doing 🙂

Helpless!

I will never forget the night Pippa was rushed into hospital bleeding and in excruciating pain, which had suddenly come on out of nowhere. It was a very hard night which lead to a very frustrating week, with Pippa in isolation and undergoing lots of test. Finally after a week she was allowed home but there was no diagnosis to what had caused this scary event. As a husband I felt helpless.

 

We spent the next 3 years going from one specialist to another, all of which had different ideas. Meanwhile, Pippa was starting to struggle with major fatigue and joint pain on a regular basis. After about 18 months had passed a diagnosis of fibromyalgia was made and to be fair to the health professionals some of the symptoms are very similar, however not all!

 

The next 18 months would be full of appointments, where nothing was really working or adding up. This was a very difficult time for us all. Finally after we kept questioning the decision and seeing yet another specialist, Pippa was finally diagnosed with Ehlers- Danlos Syndrome. We went home and did lots of research. This conditions ticked off all the symptoms that Pippa suffers with.

 

We came across the Hypermobility Syndromes Association website. This charity really helped us begin to understand what we were dealing with. We loved the fact they not only carry out research, they have support groups and information packs for not only the person with the condition but other family members too. They also carry out work educating healthcare professionals.

 

There currently isn’t a cure for Ehlers- Danlos Syndrome and what the future holds for Pippa is unknown. However there is a good chance she will end up in a wheelchair at some point. But whatever happens I know Pippa won’t let this condition define who she is. She is an amazing wife, mother and teacher. She continues to battle everyday, never letting her pain, dislocations or fatigue beat her. Unfortunately there is a 50% chance that Isabella will have the condition too, but she is as strong willed as her mother, so I have no doubt she will tackle it head on.

 

We came up with this challenge to help raise awareness for the condition and to assist the charity with their vital work. We don’t want other families going through the 3 years of upset that we went through. The last thing we want is sympathy or pity and we know everyone has their own issues behind closed doors. All I’m asking for is your support, as I mentioned in a previous post, I will continue to raise awareness for the HMSA but I won’t be pestering you for donations again. You have all been amazingly generous over the past 10 years and I am so thankful. If I could ask you if you could make a donation one last time, we would be so grateful. Please help us reach this last target, every penny helps.

 

www.ironcause.co.uk/donate

Last few remaining day tickets released! HMSA & EDS UK conference

Posted By HMSA Social Media Coordinator, September 19, 2017

If you would like a DAY TICKET for the HMSA & EDS Support UK Management and Wellbeing Patient Conference, the last few remaining day tickets become available today! The tickets are available to both members and non members (If you are a medical professional who would like to attend, please do not hesitate to contact us). If you would like to view more information on these, or the event itself, please https://www.eventbrite.co.uk/e/management-and-wellbeing-con… (NB, the images used in this post are taken from past HMSA conferences at a different venue and are included for illustrative purposes only)

Fundraising Content Creator – Volunteers needed!

Posted By HMSA Social Media Coordinator, September 9, 2017

Our fundraising team of Kate and Hannah are doing an amazing job of looking after our fundraisers but they really need some more help so that the HMSA can support all the people that raise funds for us.

We are looking for people who can fill the posts of “Fundraising Content Creators”

In plain English we are looking for people who can create posts which we can use across our social media platforms which will:

•Create awareness of forthcoming events providing publicity to maximise funds raised.

•Keep our followers informed as the event takes place, for example regular updates throughout the London marathon so we could track the progress of our runners

•A follow up post after the event with pictures thanking our fundraiser and giving the total of money raised

As part of our volunteer program we provide ongoing support and training where needed and volunteering has lead to new career opportunities for many of our past and present volunteers.
If you would like any more information and an informal chat about what we can offer, please email our volunteer coordinator on Brenda@hypermobility.org

PoTs UK conference – Hannah Ensor

Posted By HMSA Social Media Coordinator, September 8, 2017

Our kids and teens Patron and HSD ambassador Hannah Ensor, attended the PoTs UK conference. Hannah was representing the HMSA Charity! We will have more info for you in the next enews! 😀

This took place Friday the 8th September.

Thank you Hannah!

Blogged by Debbie Hardwell – Pain

Posted By HMSA Social Media Coordinator, September 1, 2017
Pain.
It literally is a pain!
We are all different in how we manage it and there is not necessarily a right way – it is what works for you. Medication is not always the solution; sometimes it is adapting how the mind and body reacts to that pain and learning to recognise to stop before falling down the hole and then having a big climb back out.

I am never sure if it is unfortunately or fortunately that for me, the only thing available to me is Paracetamol. I have intolerances to other pain relief. This has left me with the option of it being about how I manage the pain.
In the early days of my diagnoses, I was on a mission to fight the pain, and push through barriers, I would show it who was boss! But in reality this was not so, for all I was doing from this approach was exhausting myself and having several episodes of boom and bust.

Through my learning of Pain Management I have learnt to tap into the pain, acknowledge it and to accept it. Rather than push through, I will recognise what my pain levels are at and how much my body can cope with today.
I have always been a planner and that now helps me through. I look at what I’m going to be doing, how long can I do it for, and will it need several attempts. If I look at the garden as an example, I am unable to do to the bigger tasks, but give me a seat and some pots and I can sit and make them look pretty. It is even possible to sit and prune roses. Depending on how I’m feeling I may only do 10 minutes, another day I may manage an hour. You have to start listening to your body and tuning it to what it feels like it can cope with today. In the past I may have thought 10 minutes! It’s not worth it!, but it is worth it. Anything that encourages us to keep moving and to get enjoyment is always worth it. It also means you are not giving up – you can still live with pain and have a happy life.

IS disclaimer – http://bit.ly/2vAPzbI
For more information and support, please visithypermobility.org . If you have a story or article to share please contact kim@hypermobility.org


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.