Me today – sorry to have missed my regular Sunday blog groups!
Me today – sorry to have missed my regular Sunday blog groups!
OK not quite a film star! I might have mislead you slightly in the title, but I hope it got your attention. Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”! I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!
We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.
Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features. If you watch closely you might find yours truly in the mix!
Please take a look – bookmark for later – share with friends and family. Just getting the name out there raises awareness for us! Details of fellow zebras can be found on Jenni’s channel.
Find Jenni here:
Thank you for watching!
OBSERVE our stripes – we are rare – we are zebras – we have a genetic connective tissue disorder – we have Ehlers Danlos Syndrome!
This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!
I will save you from more wittering today and publish the second half later this week!
#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong
I warned you yesterday that I will be going totally overboard with the EDS awareness posts and zebra pictures this month.
To kick us off here is a quick explanation of “Why the Zebra?”
Medical students/junior doctors have always traditionally been taught to look for the simplest explanation when diagnosing a patient in order to prevent misdiagnosis of rare conditions. If it looks like a horse and it sounds like a horse……if you hear hooves, think horse…..etc!
In medicine the term zebra is used to describe a rare disease/illness/condition, but often it can feel that medics forget that whilst rare, zebras do exist and can struggle to get a diagnosis and treatment. This is frequently the case for Ehlers Danlos Syndrome patients, and so we have become known as medical zebras. This has been adopted by the worldwide community now as the identity for EDS and through the use of social media helps to unite us.
I have written before in my best proud mum style about the beautiful girl’s art, and not so long ago a friend suggested that we look at getting her work some exposure. This new website was suggested, where we could show her drawings and paintings, but also create some lovely unique greetings cards for the public to purchase.
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Hubby and I talked about Unique Selling Points, the lovely girl just felt embarrassed and didn’t want her name on anything, so using the emblem for our genetic condition, Zebra Girl was born. We are really hoping that alongside creating art, we might be able to fundraise for The Ehlers Danlos Support UK through selling some greetings cards. I have just created a facebook page and would appreciate some likes and shares to get the word out there! Art by Zebra Girl facebook page
I know I am a hopeless salesperson and even worse at marketing, so that is why I am sharing a review from Debbie of Mum’s The Boss Blog. She reviewed the We All Send Cards site, looking at it from an artist’s, business builder and customer perspective. I hope you enjoy the review and take a look at the site by going direct to Zebra Girl or to the WASC site, – both links will help fundraise for EDSUK.
“Today I’m taking a look at WeAllSendCards a new UK website for sending personalised printed cards, which also offers a fantastic business opportunity. There is also a giveaway at the end of the page so please read on…
How many cards do you send in a year? Even excluding the Christmas card marathon, how many do you send?
If you are anything like me, you probably don’t send as many as you would like to. I’d love to send more birthday cards, thank you cards, and cards to celebrate all kinds of things. I love receiving cards and I think it is lovely to send them too. But the occasions creep up on me and I find I don’t have the right card at the right time and I can’t be bothered to go out and buy a stamp and post them…..does this sound familiar?
I sent myself a Thank you card just to test out the concept – it was lovely to receive. This would be great if you were in business – you could put company relevant images inside the card and thank your customers and suppliers. you could also put a coupon or QR code in there if you wanted to. But it’s also nice for your personal occasions.
You have two options for delivery with these cards. Firstly you can have them totally printed and just send them directly to your recipient. Alternatively (and this is great), you can part-personalise them and then have them sent to you in cellophane – you can then hand write a bit on the card and send them on. They tend to arrive at the first destination about 4-6 business days after you order them (more if you are posting abroad) but as long as you leave yourself a week or more of notice then this is a great service…….continued”
Debbie goes on to explain that as an artist or designer there are both business and creator opportunities at We All Send Cards. For Debbie’s complete article please visit Mum’s The Boss.
It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you. To view the accompanying video to the post please visit Lancashire Evening Post
As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.
Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.
However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.
It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.
After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.
Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.
However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.
Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.
“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.
“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.
“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.
“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.
“I was also diagnosed with POTS.
“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.
“So being around a pool made me nervous because I did not know whether I was going to collapse or not.
“Both of my conditions are invisible.
“To look at me you wouldn’t think there was anything wrong with me.
“But there is and it badly affects me.
“Because it’s so rare, they had not been able to diagnose it when I younger.
“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.
“It was just brushed off, but actually I have been battling with it since I’ve been a baby.
“It’s kind of nice in a way to finally have a diagnosis.
“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.
“I have just got to get on with it
“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.
“Back then, they didn’t know why, but now there is an answer.
“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.
“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.
“People can’t believe what I have achieved with what I have been dealing with.
“I have never complained about it or spoken about my condition and how it has affected me.
“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”
There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.
“It was really, really hard and it took quite a few months to come to the decision,” said Slater
“I spoke to a lot of medical professionals and also to my support team at British swimming.
“I had to make the hard decision to retire for my own health and well being.
“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.
“I know that it is the best decision for me and I have just got to look at what I have achieved.
“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”
Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.
“It was just a party atmosphere,” she said. “The atmosphere was incredible.
“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.
“They all wanted to speak to us and have pictures. It was amazing.
“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.
“But the Paralympics were so much bigger.
“Just the size of the food hall was incredible – it was like the size of four Asdas.”
Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.
“The relay was between us and the Australians,” she said.
“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.
“When I dived in, I had to catch the Australian girl up.
“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.
“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.
“It was so, so nice to stand on the top of the podium and see the GB flag rise.
“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.
“That was really, really special for me.”
Today is Rare Disease and I have a wonderful piece for you to read about my own rare disease….I wish I had written it but another UK Zebra friend & mum, Sarah, is the author! Enjoy!
I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak. I may get into that all in a bit more detail at a later date. I will try to explain what it means to live with them each day. Why I might look fine one day and not the next.
CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected. I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested.
CMT affects the nerves in your peripheries, your arms and legs. Our body’s system of nerves is similar to a network of electrical wires………continued
My EDS diagnosis came later, 10 years later.
At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives with her beautiful smile and the skills of a contortionist and we started to want answers to all of our unanswered questions. It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s gross hypermobility. After an hour and a half’s consultation I now had a shiny new badge to wear. The missing pieces of our puzzle now slotted into place.
EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have Hypermobility Ehlers-Danlos Syndrome. The exact cause of HEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.
It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. I sublux my joints daily, this week cutting a slice of cheese I popped out my wrist and couldn’t lay on my back in bed or one of my shoulder blades would sublux. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again. As my joints are less stable they are prone to sprains and strains……” continued
This is just a small part of Sarah’s post and I would really like you to visit her as this is my story too…well at least the EDS parts including the daily dislocations, dysautonomia, pain, gut problems and in our family neck issues with recurrent migraines. All 3 of my kids have symptoms too, with the boys both experiencing dislocations of the knees in early teens, one has bizarre stretch marks on his back whilst the other has mild pectus excavatum (deformity of sternum), and one has severe migraines & I suspect a Chiari malformation. The lovely girl has chronic pain (which she deems not too bad although it is daily), dislocations and difficulty holding a pen. All three have poor proprioception (are clumsy), have snow vision on standing (dysautonomia) and anxiety…..
Find Sarah’ complete post here : One in 12 Million
Be sure to watch her wonderful kids’ film here: https://youtu.be/rTtcT5qaiZw
Last week I took up a volunteering role as a Chronic Pain Advisor for the online community of a UK disability charity (Scope). I was approached through this blog to take part and those of you who have been with me for a while will know that this is right up my street. To say that I am deeply honoured to have been asked is an understatement.
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I have started to make some comments on the site, and it suddenly felt very real when an official title popped up after my name. It has also made me consider the importance of just how we relate to each other and the advice that we give – as a health care professional, a volunteer advisor or indeed a loved one. For each and every person is an individual and will come with very different needs – how often is this truly recognised by our health care professionals when seeing people with chronic conditions?
At a recent support group meeting the importance for sensitive communication skills became very apparent. Everyone in the group either had the condition or had a relative/loved one with, in this case, Ehlers Danlos Syndrome and had gathered to hear a medical professional, deemed an expert in his field, speak. Spoonies, don’t shout me down, but I do worry sometimes that when a group gathers there can be a danger of frightening new members with horrific tales of hospitals and procedures, but also a competitive element toward who has which symptoms – I have written about this before.
It became increasingly obvious as this particular meeting went on, that a couple of comments made by the presenter were very upsetting to some group members. I am certain that there was no ill will meant, but a point was made that this illness is not progressive, and the insinuation was that any progression in symptoms was down to the individual not exercising sufficiently. Now there may be an element of truth in this – the need to keep moving in order to prevent deconditioning – but the way in which it was said made many in the room feel like they were not trying hard enough. Picture yours truly sat in the front row in my wheelchair, and the message that I could have taken was that if I had done my exercises properly I could have restored my mobility and eliminated my pain.
Of course, I know that this is not the case for me and I also know that I do work at keeping as physically fit as I can and have always done my EDS exercises. Years of yoga kept me nursing for nearly 20 years beyond my initial back surgery! I also know that I can be bloody minded in my determination to do something…..but on days when fatigue hits, or pain flares, or the POTS leaves me reeling with dizziness and unable to sit upright, I assure you I will not respond well to being made to feel I am not trying! (Family..hold your tongues now and forget the other meaning of the word).
So this takes me back to my original point – we are all individuals and whilst we might share a diagnosis and certain symptoms, our actual experiences will all be different. Only this morning someone said to me that they appreciated that their own pain was nowhere near as bad as mine, but they would like some advice….But pain is subjective and we cannot compare my pain with your pain. I replied that one of the first things I learnt as a student nurse nearly 30 years ago was “pain is what the patient says it is” and I still believe this. Sadly a lack of time at appointments, a lack of communication skills to unpick a patient’s symptoms, and a lack of continuity to develop a trusting relationship between patient and medic, all fail to allow for true individual care of the person. This can be made even harder to swallow when a sweeping comment is made about symptoms by someone who has never actually experienced them.
It is so important for us spoonies to feel that we are listened to and being treated seriously – actually I think this is important for everyone, particularly where health is concerned and I hope to be able to justify the faith shown in me by the charity. The exception to this though is the couple of cases of man flu in our house at the moment, and their belief that their pain is worse than anything else!!! This is where my patience wears thin!