Bobbi’s Journey With Arthrochalasia EDS

To round off EDS Awareness month for 2016 I have my first ever guest post!

This post is by my amazing friend, the lovely Bobbi of Ring Splints by Zomile who has the rare Arthrochalasia Type of EDS. When EDS is covered in the media it’s usually sufferers with my own type which is the most common form of the syndrome.

Arthrochalasia EDS – My Story

13249466_10157066185330226_1204906323_nI’m Bobbi, I have Ehlers-Danlos type 7 – now called Arthrochalasia Type along with associated conditions and rheumatoid arthritis.
There are believed to be only around 40 confirmed cases of arthrochalasia EDS in the world, which I suppose makes me pretty rare!
Ehlers-Danlos is a connective tissue disorder and there are many types all of which share some complications. The severity of the illness can vary greatly from person to person and type to type.
I have known all my life I suffered with this rare syndrome. When I was born My Mum said she knew I would be trouble, how little did she know! I was born breach like a small package; all parcelled up, arms and legs and head folded in like a ready packaged chicken. My Grandma commented that I looked like a Pekingese dog which sounds funny but actually I had a very tiny little face with big eyes and my skin was so loose and wrinkly it was as if I had skin two sizes too big. It was said at first that I was very overdue, but that quickly turned out not to be the case. I just had the cutis laxa type appearance of wrinkly see-through veiny skin all over my body.

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Paperchase Serengeti Range – Zebras!

I mentioned in my post about Manchester Made Up that I had found a few great zebra themed items in Paperchase and that I would do a short post to tell you all about them.
For those of you that aren’t aware, the zebra is the mascot animal of Ehlers-Danlos syndrome and as a result many of us with EDS collect zebra themed items. We might collect them because we love zebras or because people buy them for us on a regular basis – some EDSers have even been known to get fed up of the whole zebra thing!
I love cute zebra items but don’t feel the need to wear zebra print absolutely all of the time or have absolutely everything with a zebra on it – I have to actually like the item or have a use for it.

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So, the range Paperchase have brought out with zebras and Aztec inspired patterns (bit of an odd combo but it works!) is called ‘Serengeti’.
I got this adorable money box and some incredibly, awesomely cute little salt and pepper pots all in the shape of zebras, yes those little dinky zebbies dispense salt and pepper! Salt is often very important to people with a hypermobility syndrome such as EDS as many of them, including myself have secondary PoTS. Now we can have a cute little zebra reminding us to put plenty salt on our food to keep us upright! As soon as I saw these I knew I had to have them.

26241973835_1a8d189e5d_mI ended up going back to the store to get the journal and pen from the series.
The ‘Ideas Journal’ has several different types of pages aimed at helping you keep track of ideas as they come to you. Great for planning blog posts!
It also has some pages with squared paper so very handy if you enjoy crafts such as knitting, crochet or cross stitch – you could copy down a chart you are working from to carry it with you more easily or design your own as part of an idea!

I’ve since found a whole heap more covetable items on the Paperchase website that I didn’t see in store – and thank God or I would likely have been taking out a mortgage! I can see me being a regular customer while this range is in store.
Here are some images from the website of some of the other items:

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Are you a bendy who likes zebra items or do you avoid them at all costs?