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Celebrating Volunteers’ Week

Posted By Donna Wicks, June 11, 2016

This volunteers’ week we’ve been sharing the stories of some of our team over on our social media, they’re a varied and talented bunch and we simply could not function without them. They do everything, our busy social media team are all volunteers. Our group leaders are all volunteers. Our shop, helpline, fundraisers, finance team and so on? All manned by volunteers.

Our Information Standard process is a labour of love, but guarantees the health and social care information we provide to patients and the professionals who treat them is up to date, relevant and evidence based. The volunteer in charge of this work is Cathy Board. She tells us all about her time working with us.


“It’s 3am and once again I’m sat here wide awake! I know that by 7am I will be barely able to keep my eyes open but need to get my daughter to school, so will say goodbye to sleep for another 18 hours! However, I can now put my early morning (I’m bright as a button but it’ll only last a couple of hours) window of energy to good use and take a look to see what’s happening with the HMSA.

I’ve been a volunteer now for a couple of years and started as Deputy Group Leader for the Hampshire area support group. I quickly grew in confidence and took over the role as Information Standard Coordinator and I have to say I am now passionate about the HMSA charity, what it stands for and constantly amazed by what we achieve – we’re all volunteers with a Hereditary Disorder of Connective Tissue (HDCT) and we really make a difference.

My former life (before EDS became a real problem) was in the corporate world in Human Resources. I really loved my job and got involved in all sorts of projects like Investors in People and ISO9000, so when I found out that the HMSA had the Information Standard accreditation I really wanted to get involved. I then took on the role of IS Coordinator which I really enjoy. I’ve learnt loads and also had the opportunity to put my skills and experience to good use.

I had to give up working when I was in my early 30s after trying to hold down a part time job for a few years, but failing miserably. The thing I found most difficult about not working was that it felt like I’d lost my identity. The first thing someone asks you when you first meet them is – “what do you do?”. I used to dread that question as I didn’t know how to answer. The short reply of ‘nothing’ gives entirely the wrong impression, yet the actual story is somewhat long-winded and I find it difficult enough to explain to family and friends, so talking to a complete stranger who wasn’t expecting your medical history is not just distinctly odd, it’s inappropriate and leaves everyone feeling slightly awkward.

However, now my reply is “I volunteer for a charity called the HMSA who provide advice and support for people with Hereditary Disorders of Connective Tissue. “ and the conversation begins…..

There are so many great things about volunteering for the HMSA, to explain them would produce a script of mammoth proportions. So, instead I’ve listed some below.

* Its a great feeling when you feel you have helped someone who is struggling. I personally can’t go on the helpline as I have a phone phobia, but I love doing events in our local area. We have a stand and spend the day talking to both the public and professionals.

* There is no pressure at all. It is made very clear that health and family etc come first. We all have a HDCT and completely understand the difficulties each of us face. The charity promotes self-management of our conditions and they practice what they preach. We look after one another.

* I’ve learnt so much about all of the HDCT conditions which has been interesting and valuable in learning to manage my (and my daughter’s) EDS.

* I love being part of a team again. Although we all work remotely, we are amazingly effective at working together, using things like facebook, skype, email etc. Also we have such good fun, you feel a real sense of belonging to something.

* The thing that I have found to be a huge benefit, is the support that I get from everyone. We have a specific facebook group which we all post to if we need some support – with absolutely anything, not just HDCT or Charity related things. We have people who know as much, and often more, than some medical professionals. We are also highly respected within the HDCT medical fraternity and seen as experts in our conditions. There is always someone around (and a high proportion of insomniacs!) who you can talk things over with.

I would recommend volunteering for the HMSA to anybody who has the capacity in their lives to do something, no matter how small. There are opportunities from doing things just as and when you are able to – could be an hour a month – right up to team leader roles where you can be involved in the decision making and future direction of the charity.”

If you think you could be a part of our team, contact Brenda on 🙂

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.