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.
The last day of April and the showers are having a laugh as they are more like downpours. Hubby has gone into the abyss this morning – or rather the Year 5 activity week in Kent where he has mud, zip wires, mud, archery, more mud, climbing, yet more mud and fun! All with approximately 60 nine and ten year olds…eeekkkk! There will even be a disco one night, so I hope he remembered to pack his sparkles.
The main event of the week in our house has been the student engineer turning 22, although at times I wonder if it was 5. His mood swings are off the scale at the moment and the lovely girl and I are counting down the days until his final exams are over – he is always a complete nightmare to live with during exam season! But I don’t know where the time has gone but my little boy has grown into a young man about to enter the work force (hopefully with a top notch degree in Electronic Engineering) and a world where he speaks a different language to his parents (tech!!).
The lovely girl took her final art exam and passed with full marks. Her work will have to be moderated, but unless the moderator looks at it with completely different ideas to her art teachers, she will have an A*. She is so modest that she will hate me for even writing about it – I wish I could say she inherits her talent from her mother, but I’d be lying. No, not from her father either before you ask!
Yours truly has been fitting in a couple of book reviews and a trip to see the wonderful film Journey’s End around an ongoing migraine – you know the type that you think has gone and than a flicker of sunlight and bam, there it is again. Several days on now and it has gone, but my head is still stuffed full of cottonwool and my tongue has been secretly pumped with fillers! The film, adapted from the play by R.C.Sheriff an old boy of my school, is something that I would like to review as a separate piece for you, so watch this space!
Finally, May is Ehlers Danlos Syndrome Awareness month so I give you fair warning now that there will be a constant supply of zebra stripes on this blog. Meanwhile I hope that you will find my selection of posts this week both enjoyable and useful. There are pieces about tick bites and Lyme disease, how to relax doing art, and getting a dog. For ladies of a certain age Tasheenga brings us “That Bitch Big M” – seriously funny!! There are also a couple of very inspirational posts from within the wonderful spoonie community!
So grab a coffee, turn off your phone and sit back to enjoy some great blog posts.
This is a very open and honest post that Caz from Invisibly Me blog has shared with Talk Health Partnership Blog – she really inspires me and I hope that you feel the same. Even if you aren’t one of the chronic illness community, please read this amazing young lady’s story!
Image from Invisibly Me blog
“Some people get a day. Some may get a week, a month, a year. Others may get no warning, simply waking up with a new life.
From IBD and cancer, to colonic inertia, pelvic floor dysfunction and bowel trauma, stoma surgery is undertaken for various reasons. It may be temporary, with the hopes of being reversed at a later date, or it may be permanent.
One thing remains constant: having a stoma is a big deal, though the experience of life with a stoma is as different as every individual is unique.
Pre-Op : Ignorance Is Bliss?
Although I had forewarning and agreed to the surgery, even as I was being rolled in to the operating room my brain hadn’t quite absorbed what was happening. I talked to my parents about it as though it were a clinical rather than personal issue, as though it were happening to someone else. While my parents were upset, I was busy preparing for surgery and focusing on the practical things I could do. It was my third operation but it didn’t feel any easier to get my head around.
In some ways, there was an element of ‘ignorance is bliss’. I didn’t want to know too much; just enough to prepare myself, not too much to scare myself.”
Normally I would start a Monday Magic whilst sitting with a cup of coffee on a Monday morning. But since I was last here, I have been found lurking in hospital corridors again….when a nurse pal texted me last week saying she hoped the picolax (medicine used for bowel clearance!) wasn’t too awful, my response was it wasn’t awful enough as I had to go back for a repeat run. So the weekend has seen me on clear fluids and then foul fluids (a different, stronger bowel prep), and another admission this morning. Several nurses looked at me and said that I looked familiar….well let us just say that i will be even more familiar as we go for the third time lucky. Aghhh….I keep telling them that my gut is also affected by dodgy connective tissue, making it resemble baggy tights!
Enough of that…..there have been some really lovely, inspirational moments this week too that have not involved hospitals or drugs. A Performing Arts Evening hosted by my Alumni committee, where some very talented people from across the generations and the disciplines spoke and performed with such passion and dedication. Actress Molly Hanson left us in no doubt just how hard it is to break into the world of acting, the hard graft required at drama school and then the months spent doing any job to pay the bills. But the elation of winning an acting nomination recently made it all worthwhile. Amongst this week’s blogs is one that Molly writes with student Isobel Thom (see previous post about Izzy here).
Beautiful young actresses Molly and Izzy
Young singer/songwriter Josh Selimi is currently studying accounting whilst looking for an agent and promotion, whilst at a very youthful 90, Bob Barter stole the show when he took to the keyboards and entranced us with his jazz.
The following night we were treated to a performance of The Adams Family by our daughter’s and eldest son’s schools. Staged in a local theatre, these young people sang, danced and acted their hearts out – whilst many are studying for GCSEs and A levels.
The middle child celebrated his first birthday away from home and was in full student mode outside a pub by midday. He actually hung up on his mother when I phoned him and sang Happy Birthday….so hubby phoned straight back and sang the next line, with the eldest finishing off our little ditty! Talking of birthdays, yours truly spent the weekend up to elbows in icing and glitter creating a pinata unicorn cake for a special 6 year old.
Without further ado, please spend a little time having a look at these great blog posts – enjoy some tips for coping with “one of those days” and breaking down tasks into bay steps, and learning that laughter really is the best medicine. Enjoy!
The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to. Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics? There is only so much stress one old girl can cope with!!
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This has been another of those medical fortnights, doing the rounds of the hospitals and doctors. I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this. So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:
So where were we? Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week. But he doesn’t have an Ology, so it might not go well!!
Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet! Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!! I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday. So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!! I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!
It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital. I believe it is called the chronic life! So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..
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
Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport
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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.
Exceptional Zebra, EDS swimmer Stephanie Slater
Stephanie Slater
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.
Stephanie Slater shows off her medals.
“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.
Stephanie Slater moments after winning her silver medal in Rio
“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.
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…..
PainPalsBlog 