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


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.