Are you #HMSAware?
Follow the HMSA’s website and social media for a look at the conditions the HMSA works with, their impact on the lives of those who have the disorders and how the HMSA helps by raising awareness and lobbying for change.
2017 is the second year the HMSA has run this event. Last year saw an Early Day Motion raised by our patron, Norman Lamb (MP). We were astonished at the support from so many MPs and has led to some excellent progress in awareness, not just among the general public and media, but also to services provided at local levels. This year we want to achieve a lot more, and we will need your help!
Each day, Monday to Friday, we will take highlight one condition, starting with Marfan Monday! Our HMSA Marfan Ambassador, Shona Cobb, will start events off publishing her article on our website. We’ll be monitoring discussion and questions using #HMSAware on all our social media platforms, from twitter and insta as well as on our Facebook page, and in our Facebook Members only groups, so to join in, just use the hashtag.
Today marks the beginning of Marfan Syndrome Awareness Month, a chance to spread the word about one of the hypermobility syndromes that we support. Our Marfan Ambassador, Shona, will be leading the month and sharing her story from diagnosis to treatment in the Marfan Monday posts.
This month is also a great chance to ask any questions that you may have about Marfan so feel free to leave some in the comments below and we’ll do our best to answer them!
Shona Cobb – HMSA Marfan Ambassador
HMSA vlogger Danielle has had a beautiful baby girl! Congratulations!
Primrose will be 6 months this week!
Danielle gave us a few words about being a bendy mumma
‘As a first time Bendy Mumma things are more challenging. But thanks to the wider community we have found many ways to make the world work for us. We use several types of baby slings for;
When our little lady wants to be held and Mummy’s arms are tired.
When Mummy is in her wheelchair.
In the early days of nursing.
We go to baby swim classes once a week in a hydrotherapy pool, which allows us both to play whilst strengthening our muscles. We have to do things a little differently but so far I feel by adapting the situation we are able to do everything any other Mother and Daughter would be able to do. Being Parents is so rewarding, she is such a joy. It’s incredible to be able to share her with our family and friends and we just couldn’t imagine life without her.’
Primrose was very poorly at the start of her life so was not weighed until a week old. She weighed 8 pounds and 6oz and was 19 inches long. Altogether now…AWWW!
Dr Ranj answered probably our most frequently asked question.
We couldn’t have said it better ourselves!
Those who can do so without aggravating their hands, please applaud this outstanding explanation!
The kids and teens info written by our HMSA Patron Hannah of Stickman Communications by Hannah Ensor can be found here: http://hypermobility.org/help-advice/kids-teens/
On a new webpage in our “Help and Advice” section, Professor Stephen Porter, Institute Director and Professor of Oral Medicine, UCL Eastman Dental Institute, London, writes on aspects of dental disease and dental care in EDS.
To read this article click here .
A Hakim, Chief Medical Officer and Trustee