I’m back! I still can’t move my head much due to stiffness from muscle spasm, but at least my typing arm is functional and I’m no longer in pain 🙂 .
My big news for the week is that I’ve created an email support group for people in the UK who have both Ehlers-Danlos Syndrome and Mast Cell Disease (whether that’s Mast Cell Activation Disorder or Mastocytosis). There are international lists which cover both these diseases, but the health-care system is vastly different abroad to our NHS and there are also fundamental differences in welfare benefits and social care, which is why I thought it would be nice to just have UK contributors where we’re all basically on the same page.
The other main reason for only including UK sufferers is that I’m ill myself, and simply can’t cope with the volume of members should the group be open to my international followers (this blog has now had over 15,000 visitors in 4 months which is fabulous but would be completely overwhelming if I had to moderate that many messages on a forum when some days I can barely manage to get dressed and feed myself). I can only apologise for the exclusion of my international friends, but hope you can all understand my limitations.
Criteria for admittance to the group is:
- You must live in the UK
- You must have a confirmed diagnosis of either Ehlers-Danlos Syndrome or Hypermobility Syndrome
- Plus you must either have a confirmed diagnosis of MCAD/Mastocytosis or at least be on the waiting list to see a consultant to confirm diagnosis of MCAD/Mastocytosis
- The group is open to parents and caregivers of partners and children who fulfil the above criteria
The group is Members Only and membership has to be approved by myself. The group works via email, whereby one email is sent to all members of the group. You can receive emails daily, or a weekly digest.
To join the group, either visit http://uk.groups.yahoo.com/group/edsmcasuk/ and click on the ‘Join This Group’ button. Or send an email to email@example.com (the subject heading is unimportant, but you must use the email address you’d like group messages to go to). Please note: if you request to join but don’t hear anything back from the Group within 48 hours, please check your spam folder as Yahoo! emails often initially end up there. Any problems or queries please email the List owner at firstname.lastname@example.org.
I’m expecting the group to be extremely small (as it was only created 2 days ago there are currently 3 members, but we have a wealth of information between us) so you won’t be overwhelmed by messages. My hope is that we can offer support, information and friendship as we each travel our individual journeys through the maze that is EDS and mast cell disease. I very much look forward to seeing you on the group 🙂 .