The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

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Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

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Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

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Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

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Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…

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Monday Magic – Inspiring Blogs for You!

Monday Magic

Good Morning, all!  Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!

The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary.  Dad would tell you that he would get less for a life sentence!!

A very good friend contacted me earlier in the week with the sad news that her mum had died.  She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad.  They had been married over 60 years.  It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.

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Beautiful bank holiday Monday!

When I received that message my own mum was here and I should probably point out that we have a great relationship.  She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again.  I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there.  No matter how old you are,  it is always possible to feel like a teen again! A naughty teen at times!  Seriously though, thanks mum, I couldn’t have managed without you.

This week I have been able to spend time finding new groups and meeting new bloggers online.  So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”.  I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!!  There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.

So as usual, grab a coffee, sit back and enjoy…..

https://suzie81speaks.com/2017/07/08/should-you-self-censor-your-personal-blog/

https://fancypaperblog.wordpress.com/2017/08/22/mental-health-be-kinder-to-new-mothers/?fref=gc

https://iwillnotliveinvain.wordpress.com/2017/08/26/vaguely-nauseated/

https://mindovermetablog.wordpress.com/2017/02/22/why-its-sometimes-good-to-look-back/

https://jellified.wordpress.com/2017/08/25/from-the-start/

https://addandsomuchmore.com/about-the-name-add/

https://nolightwithoutdarkness.com/2017/08/23/when-your-mental-health-affects-your-job/

https://fibromyalgia-chronic-pain.blogspot.co.uk/2017/01/to-reduce-stress-and-pain-in-your-hands.html

https://cfsmeandkingdomliving.wordpress.com/2017/08/27/redefining-the-dark/

http://blossomandcompany.co.uk/italkdisability-campaign/

Please remember to comment, check out other posts on these blogs and find a new writer to follow,

Claire x

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Models of Diversity – Challenging Stereotypes

I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have.  When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..

Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini.  No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model.  Do these “perfect” images often published on social media influence the body image of those viewing them?  Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.

In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.

Are Disabled Only Runways A Good Way To Showcase Disabled Models?

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Selina Towers – photo from Models of Diversity

A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.

I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.

For the full article go to Models of Diversity

A Fatal Blow over Disabled Parking

Last night we watched a repeat of the Channel 4 documentary “One Killer Punch“, which examined the phenomenon of a one punch kill.  It was very emotive and as the mother of two young adult males, I feel devastated for the four families torn apart in the first and last cases shown.  Difficult to watch and I am sure extremely hard to make, there have been calls for it to be shown in all secondary schools. Everyone will have a different and personal opinion whilst watching these young men and the families speak on film and this is in no way meant to belittle a heartbreaking subject.

Rather I want to highlight the other case which all hinged upon the right to use a disabled parking bay.  I know that this is another emotive subject that those of us on “spoonie” social media will see discussed time and time again.  How many times is someone judged from the way they look as to whether they are worthy of that bay?

imageIn this heartbreaking incident, a man died because another judged that he was not in need of this parking space in a supermarket car park.  The attacker saw a gentleman walking out to place some goods in his car and, because he wanted the spot for himself and his disabled wife and he deemed the other unworthy of parking there, he got out of his car and hit the gentleman.  He didn’t stop to notice the blue badge sitting on the dashboard, or the name on it that showed it belonged to the gent’s wife.  He didn’t wait to hear that the lady was still in the store and suffers with rheumatoid arthritis.  Instead with one punch he floored a stranger and then calmly got back into his vehicle when he “heard his head crack on the ground” and drove home.

Several hours later a distraught family had to make the decision to turn off life support and another family suffers as a member is sent to jail.  What a senseless waste of a life.

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I know that there are some people out there who use relatives blue badges/disabled permits illegally, but I would like to think that they are in the minority.  In the UK being issued with a blue badge is no easy task now, and I’m sure that it is equally difficult elsewhere. I would  like to say to everyone please don’t be too quick to judge someone who doesn’t look “disabled” using a disabled parking bay – we are all different and our needs can vary from minute to minute.  Believe me, I would rather be skipping the length of the high street than needing to use a stick and wheelchair to enable me to park closer to that shop!

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Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life

“How to be Disabled…According to Stock Photography” Hilarious article by Autostraddle author Carrie

 

I have just read this article in Autostraddle and it really made me laugh – the slightly dark, manic humour of a nurse and spoonie!  I want to share it with you…..but if you are a spoonie who is easily offended steer clear!!

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“I have to take this moment to apologize. It turns out, dear readers, that I’ve been leading you astray. I thought I had this whole “being disabled” thing figured out — y’know, focusing on intersectionality, various forms of ableism, or political engagement — but nope! My mistake! Apparently I’ve been doing it wrong since birth and need to completely overhaul my approach. And who do I have to thank for such an urgent epiphany? The wide, wise world of Shutterstock.”…….

Full article at this link, do read to the end:

How to be Disabled, According to Stock Photography by Carrie

 

A Chronic Comparison?

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

 

 

 

A Chronic Christmas – inconvenient illness for the holidays

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

 

 

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

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Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x

 

 

 

 

 

 

 

 

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The beautiful Italian home of Audio Deva

 

Great initiative by Tesco to safeguard disabled parking

How many times have you tried to park in a disabled bay for yourself or a passenger, only to find that none are available and that several of the cars already parked aren’t displaying a blue badge (disabled badge)?  It is so infuriating, but why can’t people appreciate just how difficult those extra few metres can be for someone who has mobility issues, or that the narrower parking spaces make it so difficult to juggle walking aids or wheelchairs?

I have just read this article in the Telegraph about a great initiative to safeguard disabled parking at Tesco stores.

http://www.telegraph.co.uk/news/2016/10/09/tescos-hi-tech-plan-to-hunt-down-cheating-shoppers-who-use-disab/

#Ehlers Danlos radio drama “Tinsel Girl and the Big Reunion”

Whilst scrolling through the BBC iplayer earlier searching for a good drama to listen to, I came across this series with the introduction “An uplifting comedy drama about the lifes, loves and misadventures of wheelchair user Maz”.

I was pleasantly surprised when I heard that main character Maz has a genetic condition that affects her connective tissues called Ehlers Danlos syndrome.  It makes me hope that the syndrome is becoming more widely known and recognised in the mainstream.  Actress, fellow zebra and patron of Ehlers Danlos UK, Cherylee Houston plays main character Maz.

Follow this link for Episode 1 of “Tinsel Girl and the Big Reunion” by Lou Ramsden

http://bbc.in/2aC2wIX

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