CEO & Senior Medical Liaison Officer
My name is Donna Wicks and I am the CEO for the HMSA. I started working for the HMSA in December 2008; when I was very lucky to be asked to help out by the trustees.
I have a very supportive partner and 3 wonderful children; all of 3 have EDS and we have been able to trace it back at least 4 generations.
Before starting working with the HMSA I worked as a RMN (registered mental nurse) with people who had serious and enduring mental health problems in a rehabilitation setting in the community. I worked in psychiatry for 19 years and trained at Moorhaven Hospital in the South West following in family footsteps! Although I really did enjoy my nursing I started to struggle physically following having the children and I was eventually retired on ill health grounds due to my EDS; which was diagnosed by Professor Rodney Grahame in 2008.
At the time of being retired I honestly didn’t think there would ever be anything else I could do but I was so wrong because I stumbled upon the HMSA whilst researching the EDS diagnosis and thought about starting a group for people with EDS and other hypermobility syndromes in Plymouth. I attended the Residential Weekend in 2008 and made some connections there which ultimately led to me starting to work for the charity.
I can say with all honesty that I know how hard it can be for sufferers of a hypermobility syndrome which is undiagnosed and unmanaged. You can become very isolated and dependent without the right support. It is only now with hindsight and the knowledge I have acquired on the condition that I can see how it affected me throughout my teens and into later life. I have had times where there just seemed to be no end to the chronic pain and fatigue. Where I began to believe that my GP was right and I was suffering from psychosomatic symptoms; where I deconditioned so badly that I suffered injuries with no apparent reason. This did affect my mobility and my ability to care for myself and my family.
Now I exercise several times a week; not because I like it but because it keeps me fit and strong, reduces my injury potential and allows me to function. I still have to do the dreaded ‘pacing’ and still make mistakes and ‘boom and bust’ but I am back to being me and most importantly being mum, wife, daughter, granddaughter, sister, aunt…and most importantly being a friend!
I have a varied job with the HMSA and wear many hats! But in essence it is my job to raise awareness of hypermobility syndromes and to help reduce the medical indifference to what can be a complex and multi-systemic condition. I work with a variety of professionals, including the HMSA’s medical advisors, to ensure that the HMSA presents information which is evidence based and of good quality. I also manage the employed staff and many volunteers in the HMSA.
I feel that the future of successfully managing hypermobility syndromes looks promising. More medical, health, social care and educational professionals are acknowledging that hypermobility syndromes warrant research and good service planning and design. Admittedly there is still a long way to go but with the support of the HMSA members and its Medical Advisors things are improving slowly but surely; so I hope you all feel you would like to join in a ride along with us because together we can all do great things!
Past Chair Person
I was Chair of the HMSA for around 14 years. Like the other Trustees I am a volunteer. My role is to coordinate the functioning of the HMSA, ensuring that all standards and legal requirements are maintained.
I started working with the HMSA as the Membership Secretary many years ago when the HMSA was a lot smaller than it is now. I was diagnosed with the Joint Hypermobility Syndrome (JHS) or Ehlers-Danlos Syndrome – Hypermobility type (EDS-HM) myself in 1987 and like many of you have been gradually adding other medical conditions to the list throughout the following years. I received little medical help at first, something I am sure many HMSA members can relate to, which is what initially prompted me to join the HMSA.
Like many of you I am embarking on discovering how to ‘put myself back together’ and I can say I am really pleased with how much medical knowledge and understanding has improved over the last 25 years. Yet I know there is still much further that we have to go in understanding the JHS or EDS-HM and I am proud to be a part of this process.
As well as working with the HMSA I also help run an industrial refrigeration company which is a family business. It’s a very busy job and not in the most warmest of environments! So when I am not working I enjoy spending time with my husband and young daughter.
I enjoy hobbies such as sewing clothes, bespoke heat packs and baking.
My name is Brenda Jones and in 2009 I was diagnosed with Hypermobility Syndrome. It was at that time, I discovered the help and support that was available from the HMSA and their website.
Having attended the local group meetings held in Plymouth I volunteered for the helpline, well actually Donna asked me if I would help, and I couldn’t say no. So that was the beginning of my association with the HMSA.
I now have more time to spare, as reluctantly, earlier this year, due to my health, I had to take early retirement from my post as a primary school teacher. A job which I had loved and enjoyed for the past twenty one years. I have also worked as a residential child care social worker for seven years, and was employed as a care assistant in a residential home for the elderly for a short time.
I hope that I can now put some of my skills to good use by fulfilling the role of Volunteer coordinator for the HMSA and I am sure I will enjoy the challenge.
If you wish to contact Brenda please email firstname.lastname@example.org and she will be happy to help you or call 0333 011 6388 and a member of the team will get a message to her to call you back.
Social Media Coordinator
My name is Kim Clayden and in Feb 2014 I was diagnosed with joint hypmerobility syndrome finally after many years of searching for an answer from doctors, I turned to the internet and I discovered this great charity. The information on the website was vast and so informative. I loved the support from the facebook page and via twitter etc. The online community continues to grow daily so the task of keeping up with it is also a daily duty. The world of social media never sleeps so we have a great set of social media volunteers (myself included) in the background of all these platforms to ensure all messages are answered, tweets replied to etc in a timely manner. I have fell in love with the world of social media. The fact that I can speak to people from all over the world at the touch of a button is phenomenal. We now have over 15,000 people on our facebook pages which grows daily. We post help and advise, medical studies, event info and loads more across all platofforms. You can find us on Facebook, Twitter, Instagram, Flickr, Tumblr, Google+, Pintrest, LinkedIn and Youtube.
If you wish to contact Kim Clayden, please email on email@example.com.
My name is Shona Cobb and I was diagnosed with Marfan Syndrome at a very young age thanks to family history and an abundance of signs and symptoms. I came across HMSA through a friend who was a volunteer and my involvement began with writing an article for the journal, after that I was asked to joined the social media team and I couldn’t say yes fast enough. My health has stopped me from continuing my education and I’m not able to work so keeping the social media platforms up to date keeps me busy, as well as my own personal blog.
I love that HMSA offer to support to many hypermobility syndromes and I’ve always felt really welcome as someone with Marfan, rather than JHS/EDS. My love for the charity, volunteers and members meant that I was more than happy to take on the role of HMSA Marfan Ambassador, a position that I’m thoroughly enjoying. I love spreading the word about Marfan, answering questions and generally raising awareness of it. Helping people to connect their symptoms, especially those who suspect they have Marfan, really does bring a smile to my face and it’s great to be able to help where I can. I’m glad that I can put my Marfan experience and knowledge to good use.
If you wish to contact Shona Cobb, please email firstname.lastname@example.org