The 2017 Diagnostic Criteria

Media PackThe long-awaited 2017 criteria for EDS and the associated papers have been released! Phew!

The new nosology includes 13 types of EDS.
Many of these are new to the classification table, they are not newly described though as it has been 20 years since the last classification in 1997. (You can find the old 1997 Villefranche classification in my ‘Types of EDS’ post from a while back.)
This is very exciting for those people with diagnoses of these rarer types. They have finally been properly recognised as members of the EDS family!  Continue reading

Rare Disease Day 2017

Rare Disease Day 2017In case you missed the memo, today is Rare Disease Day 2017!

Added together, rare diseases are not rare. Around 1 in 10 people have a rare disease.
A disease is classified as rare when it affects fewer than 1 in 2000 people in Europe.

2017 is the 10th Rare Disease Day and has a theme of research. I’m going to talk a bit about the new EDS research and diagnostic criteria due to be released very shortly. Continue reading

Missing In Action You Say? Bendy Problems

Yes, you’re right I have been! Sorry I’ve been MIA for a month or so, I’ve been seemingly stumbling from one health issue to the next recently.

Bendy Problems

After I finally got over the virus I had which knocked me out for a week or more it was “bendy week”. Women and girls with EDS get much more hypermobile when the hormone progesterone is high in their bodies as it destabilises collagen. As a result of this and my fatigued muscles I dislocated my shoulder joints (including both the socket and the AC joint) of my left arm so much it seems to have caused some lasting damage. Rheumatology have ordered scans as they think there’s a tear. All of the muscles in the area are going into spasm what feels like constantly and this is causing me to have headaches.

My need to take extra pain relief has triggered my gastroparesis symptoms and so food is once again not on my list of things I’m even wanting let alone enjoying but I have to keep forcing something down in order to take pain relief.

Halloween

I can’t believe I missed covering Halloween on here but if anyone wants to have a nosy at some of the things I was able to do you can have a look at the photos over in my course Flickr album here.

I hope you all had a great time turning yourselves into witches, mummies and zombies and didn’t have too many “bendy problems” to get in the way!

Kath x

August Is Gastroparesis Awareness Month

Gastroparesis Green RibbonAs regular readers know I have Ehlers-Danlos syndrome. Ehlers-Danlos quite often seems to bring along quite a collection of it’s friends to play with those of us who have it. It’s really not a case of the more the merrier though!

For some of us, including myself, EDS affects the digestive system. It can cause a variety of problems there including delayed gastric emptying, otherwise known as gastroparesis. Continue reading

Hospitals & Hair

What a week! I have not had time to sit down and write a single word here as every day this week I have had an appointment (or even two!) somewhere. So many hospitals! Oh the life of a spoonie!

On Monday morning I was at the vascular surgeon who is planning some scans and tests to hopefully rule out another possible rare condition (I’m not having much luck so far on those fronts so wish me luck!) and then over to haematology in the afternoon. I’ll worry about those if/when I know more after all my tests but I have several planned including scans and one involving a hospital stay which I’m hoping I can get out of the way before September. Continue reading