Ehlers Danlos in the news!

I just want to share a couple of stories with you that both centre on young ladies living with types of EDS.  Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!

The first features a beautiful 11 year old and her canine best friend,

Assistance Dog Helps 11-Year-Old Who Can’t Stand on Her Own Accomplish Her Dreams

POSTED ON AUGUST 9, 2017 AT 2:04PM EDT

At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome.  The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair. 

But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.

 The road to Perkins started shortly after LanDan’s diagnosis. She and her mom reached out to Canine Companions for Independence for an assistance dog to help LanDan Olivia conquer the everyday tasks that had now become a struggle for her.

“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”

After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.

To read the full story visit Working Dogs

My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality.  Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened.  This is how one couple coped.

Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive

  • For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
  • Baby Zeki was born to his surrogate mother Rachael Coleman in 
  • 400 surrogate babies were registered in UK in 2016 – four times 2011 statistics

When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.

Yet their relationship is much more complex than that.

They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.

Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.

According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.

But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.

At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.

Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.

Read more: http://www.dailymail.co.uk/news/article-4790834/Mother-uses-surrogate-s-able-conceive.html#ixzz4qE3uAGYA
Follow us: @MailOnline on Twitter | DailyMail on Facebook

I hope that these stories have brought a smile to your face.

Selfies – good or bad?#body image

12797598_167283200324894_1482877079_aMy beautiful daughter stood up and gave a talk with this title at the end of last week.  Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!).  What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog.  No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.

But she doesn’t like what the selfie culture is bringing out in her friends.  The obsession with posing in crop tops and layers of makeup.  So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends.  She doesn’t find this easy and img_1165initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened.  Hopefully it made them think for just a few minutes.

Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image.  There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter.  Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves.  How times have changed!  The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.

imagesToday I think about the impact of hidden illness on body image and self esteem.  The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted.  On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list.  Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure.  Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often.  To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!!  But writing seriously, my own self worth has shifted significantly.  I no longer feel like the person that I was supposed to be.  Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??

Chronic pain and back surgeries have robbed me of my independence.  This is probably my most prized possession that I have unwillingly lost.  It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning.  The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body.  A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total.  I have never struggled with my weight, even after babies, but this has been so tough.  Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did.  I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease.  I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems.  But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing.  I miss my able body.  The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one!  I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process.  I miss my able body.

Yet I know I’m still one of the lucky ones.  There is always someone worse off than you, isn’t there?  So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes…..by measuring them with a piece of A4 paper!!  Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!instagram-in-yeni-cilginligi-a4-kagidiyla-selfie-6752966

Blue badge

blue badgeYesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal.  The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating?  The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them.  I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge.  I really haven’t changed that much!  I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council.  When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!

This has got me thinking about how much chronic pain robs us of our independence and sense of self.  I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago.  The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat.  A loss of independence and actually facing up to needing help.  My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”.  A nurse with a dodgy back is probably worse than no nurse at all!

My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. images (1) The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist.  I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress.  the stimulator can’t help with this pain.  So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless.  I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group.  One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge.  In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.

As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher.  Sometimes we need to be fooled too.

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