Hypermobility Awareness Week 2019
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, with our ‘The Hype About Hypermobility’ campaign.
Hypermobility can be a symptom of EDS, but it’s also a symptom of other conditions which also need awareness. These include The Hypermobility Spectrum Disorders, Loeys-Dietz Syndrome, Marfan Syndrome, Osteogenesis Imperfecta and Stickler Syndrome. The one thing all these things have in common is hypermobility.
Why do we need to raise awareness?
Most people have never heard of these conditions before! Also, there is a long-held belief in the wider community that hypermobility is a good thing. For a small percentage of the population, this may be true. But for those living with a hypermobility-related condition like those mentioned above, hypermobility is far from advantageous. As one of our community members said recently, “it’s not advantageous, it’s a prison sentence”.
The other reason is that there are a lot of problematic, and sometimes life-threatening symptoms that often go along with hypermobility when found within a disorder or syndrome.
That’s why the 2019 focus is “it’s not just about joints”.
Who do we want to reach?
FAMILY & FRIENDS
We want to reach our family & friends; those who love us and see us on a daily basis. The ones who support us, physically and emotionally to live with our hypermobility condition. We want to help educate them about our conditions and what it’s like to be the person living with the diagnosis. We would love people to understand just how much our conditions impact us, and how that makes us feel. We also want to have open conversations about what it’s like, both to be the person with hypermobility and for those caring for us. Being a carer isn’t an easy task.
- We need to educate family & friends about hypermobility, and it’s related conditions for our sake & theirs.
- We need to help people to understand what it’s like to live with these conditions every day, to decrease our isolation and increase connection.
- We need you! We are grateful for you!
We want to reach health professionals. Of all the groups in the community who should be able to understand the reality of hypermobility and its impacts, it is health professionals. Yet, time and time again, people with hypermobility are confronted with ignorant health professionals or worse, ignorant & arrogant ones.
People with hypermobility are often at the mercy of medical and allied health professionals due to the nature of their condition, and it’s related symptoms. I can tell you from personal experience that it is terrifying being under the management of a health professional who doesn’t know what they’re talking about regarding your condition. Patients have enough on their plate having to deal with this condition every day; they don’t need an uninformed health professional making things worse.
As part of this years Awareness Week, we will be posting a series called “Dear Health Professional” across social media. We asked our community members what one message they would like to get through to health professionals. This series will showcase the thoughts and feelings of people living with hypermobility. They’re not aimed at any profession or professional in particular, but are an overarching message to medical and health professions… and they are a cry from the people who live this life everyday.
- Educate yourself.
- Don’t be afraid to say “I don’t know, but I will find out.”
- Talk to patients with hypermobility about their real-life experiences
- Believe your patients when they say they have dislocated a joint, are experiencing severe pain, migraines or other symptoms.
- Learn the signs.
We want to reach the wider community, so that one day, hypermobility and it’s related conditions become household names. Everyone has heard of Diabetes, why not these Hypermobility conditions? We want that to change.
Joint hypermobility isn’t actually a rare thing. Older generations used to call it being double-jointed. Lots of people have some hypermobility in some of their joints, and it’s worth noting, that for some people it means absolutely nothing. For some people, it is not a cause for concern. But for others, it’s a symptom of a far more complex condition causing a range of health complications, and in itself causing debilitating chronic pain.
- We want people to know that hypermobility can be harmless, but hypermobility can HURT.
- We want people to be aware that for many people with hypermobility, it’s about more than just their joints.
- We want people to accept that we all have different skills and abilities. Just because someone has hypermobility doesn’t mean they can’t do anything – but they probably can’t do everything!
- We want employers to know that people with hypermobility aren’t being lazy or abusing sick leave; they are living with a very complex & unpredictable condition.
- We want to help people understand that hypermobility is REAL. It affects REAL PEOPLE, with real lives. The pain is as real as any other pain experienced.
What you can do to help!
- Share this post
- Share any of our posts during Awareness Week
- Change your profile picture to The Hype About Hypermobility Profile Pic (download here) in support of Hypermobility Awareness Week
- Have a conversation with someone with a hypermobility condition & find out what it’s really like
- Read more of the blog posts on our website