Monday, 3 October 2016

Disabled Facilities Grant Declined

My OT says I need a stair lift.

I've struggled on the stairs for the last 20 years but it's not something I've actually thought about, mostly because I am not some frail white haired granny, I'm a curvy lady in my early forties with bright purple hair.  I am in denial about how frail EDS makes me.

Two years ago an OT told me I needed a stair lift.  He said I could apply for a Disabled Facilities Grant from my local council but because my husband was in full time employment earning above the average wage he said we had no chance of getting one.  He also said getting a stair lift to fit the 'U' shaped stairs in our home would cost £9,000.

Nine grand for a stair lift!!!  Needless to say we didn't take the matter any further.

My current OT insisted that I really do need a stair lift.  I am not safe walking up the stairs, it is not acceptable for me to crawl up the stairs or slide down on my bottom.  She encouraged me to complete a provisional test of resources form for a Disabled Facilities Grant.

A Disabled Facilities Grant is given to disabled people by their local authority to cover large aids and adaptations to their home such as ramps, accessible bathrooms and stairl ifts.  If you are on a means tested benefit you automatically qualify for a full grant but if you or your partner is working then they take the salary into consideration and calculate what contribution you would have to make towards the grant.  That sounds fair enough, right?

The problem is the grant is for people on a low income and my husband earns a little above the national average wage.  We're not poor but we couldn't afford to take out a loan for £9,000.

Last week I got a letter from the council telling me that they have cancelled my application for a Disabled Facilities Grant because our contribution was greater than the cost of the works.  I thought this was a little odd because I haven't actually had a quote for the cost of the works.  I phoned them up to find out why we'd been declined.

Apparently they had looked at our form and based on my husband's salary they had decided that we could afford to make a contribution of £25,000!!!  I was gobsmacked.  To put that in perspective that is 75% of his annual income.  We are not poor, but there is no way we could borrow that amount of money.

Today I spoke to my OT on the phone.  She suspected that we'd get turned down but was surprised at the contribution amount.  She was quite frustrated, she really wants to help me but there is nothing more she can do.  The only thing she could suggest is going begging to charities.

The most frustrating thing for the OT is that my situation is not unique.  There are many younger disabled people (i.e. not pensioners) who need adaptations but because their partner works full time they have to fund thousands of pounds worth of work themselves.  This doesn't really seem fair when non-disabled people can spend their wages on nice cars and foreign holidays but if you are unlucky enough to become chronically ill or disabled you have to pay for everything.

I expressed my frustration to my OT.  Yes, I do get some money to help with the extra costs of living with a disability.  I claim Disability Living Allowance (I haven't yet been migrated to Personal Independence Payments yet).  I get £21.80 per week for my care needs and £57.45 per week for my mobility needs.  That money doesn't go very far when you consider my spending.

£600 mobility scooter
£550 powerchair
£40 wheelchair cushion
£90 crutches

Plus I'm looking at paying £300+ for a knee brace because the NHS can't help me.  I also have to pay £104 a year for my prescriptions, then more money for my vitamins, supplements, Xylimelts for my Sjogren's, High5 Zero tabs for my POTS, kinesio tape to keep my hypermobile joints from wandering out of place, gym ball, therabands and weights for my physio, £15 for a mandatory eye sight test due to the medication I'm on, £85 a year for dental checks and to stay registered at the private dental practice (more if I need work doing due to the damage that Sjogren's does to my teeth).  The list just goes on and on and on!

So it looks like there will be no stair lift for me.  I will have to learn to live with the pain and exhaustion, the crunching of my knee with every step, the wobbles, slips and falls because my local authority doesn't have the funding to help people like me.  Apparently work doesn't pay if your partner is disabled.

Thursday, 11 February 2016

Schrodinger's Cripple

Sometimes I have a hard time getting my head around my illness and disability.  I've been disabled by Ehlers Danlos Syndrome for so many years that living with the constant pain, fatigue and numerous other symptoms has become normal for me.  It's only when I have to take a long hard look at my quality of life in terms of a Social Services care assessment or a disability benefits application that I realise how very disabled I am.  It's quite depressing admitting your weaknesses but it's made me realise that what people see is can be a very different picture to who I really am.

If I post a picture of my dinner on Instagram and say, "I made this, it's so yummy!" you might assume that I am capable of cooking a meal by myself.  What you don't see is the PA who took me shopping for ingredients because I can't drive or get my mobility scooter out of a car on my own.  You don't see how I had to brace my knee and walk with a crutches so I can move around my kitchen, or how much pain and fatigue that caused me.  You don't see my PA peeling vegetables or lifting heavy pans off the hob because I can't do it.  You don't see me resting on my stool because the heat from the hob has made me go so dizzy I feel like I'm going to pass out.  You don't see me pushing myself past my limits through the pain and fatigue or the muscle spasms in my hand as I chop and stir.  You also don't see after taking that picture I feel too exhausted to eat the meal I just claimed to have made.

In my head I believe that I made the meal because I planned it and I oversaw the cooking of it but in reality if I had to make it from scratch on my own I wouldn't get past the first step.  Did I just make that meal?  Yes, but not really.  It's not as simple as yes or no.

Herein lies the problem.

Physically disabled people today have to be Schrödinger's cripple - there is an expectation for you to be an awe inspiring role model, a paralympic  athlete or successful entrepreneur bravely defying your physical limitations, but at the same time to get any kind of help from the government in terms of disability benefits or social care you have to be a invalided cripple who can't wash, dress or even convey food to your mouth, otherwise you get no help at all.  Very few people can be both but just because you can do some things doesn't mean you don't need support in doing others.

I currently claim DLA, Disability Living Allowance but some time in the near future I will be migrated to PIP, which has a different eligibility criteria.  The amount of money I receive each week could drastically change, I could get nothing at all or I could get almost £60 a week more.  I have no idea which, that is entirely up to the decision makers.  This is a great cause for concern for me because I rely on that money to provide the medical care, equipment and support that is not available to me on the NHS.

I looked up the eligibility criteria for PIP.  It's all done on a points system and it's very black and white. My condition changes on an hourly basis so I find it impossible to say if I can perform certain tasks such as taking a shower or walking a certain distance because they are dependant on many variables and fluctuations of my numerous medical conditions.  If I can do something one day there is no guarantee I can do it the following day, or even the following week.

To get the enhanced rate of the mobility component of PIP you must be able to walk less than 20 metres. How far can you walk?  This might seem a simple enough question to answer but for me it quite complex.  You might see me walk 20 metres on crutches from my PA's car into the GP surgery and think yes, she can walk 20 metres, but that is not the whole story.

You don't see how much pain and fatigue that caused me, you don't see how I had to make a maximum dose of pain killers and muscle relaxants when I got home because I pushed myself beyond my limits to walk that distance.  You don't see the damage I did to my unstable shoulders by using the crutches or the pain I will suffer for the next week because of it.  You don't see how I had to order pizza that night because I was too fatigued to even make a sandwich for dinner.  You don't see how I felt too ill to do anything the following day because I overexerted myself from desperately trying to be normal and independent and walking instead of  using a wheelchair or mobility scooter.

If the decision makers decide I can walk that 20 metres I wouldn't score enough points to get the Enhanced rate of PIP mobility component.  In real terms that means losing £1,853.80 a year in benefits (or nearly £3,000 a year if they decide I can walk more than 200 metres) plus no longer being eligible for a Motability vehicle.  That is a massive loss if you're struggling to survive on benefits or rely on the Motability scheme to be able to run a suitable car and retain your independence.

Iain Duncan Smith wants disabled people to find jobs and work their way out of poverty.  He doesn't seem to appreciate that not everyone is capable of working, even with reasonable adjustments.  You might presume I can work because I wrote this blog post but it has taken me several days of short sessions at the computer to compose this.  If I were writing professionally I would be expected to produce this every single day, but even if I worked from home there is no way I could do that 5 days a week to an acceptable standard.

The government believe that working can help people with chronic illnesses but for people like me the physical stress and effort would make my condition deteriorate to the point where I would be bed bound and have very little quality of life.  I struggle with just looking after myself, never mind working enough hours to earn a living wage.  Leaving the house just to go to the shop on my mobility scooter can leave me so fatigued I can't do anything for a few hours and there are days when I'm not capable of doing anything at all - and that's when I'm well!  If I get a virus or an infection which can happen up to 6 times a year, then I could be bed bound for up to a month.  Just getting out of bed in a morning is work, never mind having a shower, getting dressed or doing a few basic household tasks.

This leaves me and thousands of other disabled people in a very difficult position.  On the surface we appear too well to need financial or practical support but we are too sick and disabled to function without support.

What we need is understanding and support so we can manage our conditions and live a happy and productive life.

What we don't need is constant scrutiny, sanctions and the withdrawal of benefits and support services by people who have no understanding of what it's like to live with a long term illness or disability.  We don't think we're entitled, we don't want to be benefits scroungers but with the right kind of help and support some of us might just surprise you and actually become that awe inspiring Schrödinger's cripple.

Saturday, 12 December 2015

Disability and the high cost of living.

We've read the newspaper stories and watched them on TV - the benefits scroungers.  They haven't done a days work in their life, they all have a big TV and get everything for free, right?

I am constantly surprised by people who assume that because I use a wheelchair I don't have to pay for anything.  It couldn't be further from the truth!

But the NHS is free!

Yes, up to a point, but there are some things that you still have to pay for.

To qualify for free prescriptions you have to be on a means tested benefit, such as Job Seekers Allowance, have a medical condition that exempts you such as a thyroid condition or be completely housebound. You can find out more here: Help With Health Costs.

My husband works full time so have to pay full price for my prescriptions.  At £8.20 each it would cost me around £600 a year for my medications! Luckily there is another option for me - a pre-payment certificate.  It costs £104 a year, I pay for it is 10 instalments of £10.40 and it covers the cost of all my prescriptions.  It works out a lot cheaper but it's still a cost that health non-disabled people don't have to pay.  It also doesn't cover the costs of the supplements and vitamins that have been recommended to me by my specialists which set me back around £400 a year.

Because I am not exempt from paying prescriptions charges I also have to pay for other medical treatments too.  I have Sjogren's Syndrome and the symptoms can cause dental problems.  I have to pay for two dental check-ups a year plus I usually have to have some work done. In the past 12 months I have spent over £250 on dental work.  I look after my teeth very well but the problems are unavoidable due to the complications of Sjogren's.  Just another perk of being chronically ill.

One of the possible side effects of taking Hydroxychloroquine is potential problems with eyesight so it is vitally important that I see an optician once a year to make sure the drug is not damaging my eyes. That's another £15 a year plus the cost of a new pair of glasses if my prescription has changed, which cost around £50 for a budget pair of frames.

I live in the East Midlands and there aren't many local consultants with the expertise to deal with my health problems.  That means I have to travel to London to see my doctors.  I don't qualify for free hospital transport and I can't leave the house on my own so that means my husband has to take a day off work and either drive us to London or go with me on the train. Depending how far in advance I can book the train tickets they can cost anything between £70 and £150, which is a pretty big cost for attending a hospital appointment.  Sometimes if the appointment is scheduled for very early in the morning we have to travel the night before and stay in a hotel, which can cost £60+ a night.  Four trips to London a year can be around £500 - all for the sake of managing my complex conditions.

Physio therapy is also another cost.  It is usual practice for the NHS to allow 6 sessions on one body part before the patient is discharged - which for chronic conditions is no where near enough.  After 6 sessions you are discharged back to the care of your GP and if you still need help you have to get re-referred and wait anywhere from a few weeks to a few months for your next 6 sessions.  Private physio is the only feasible option for some people but at a cost of around £40-£50 a session it can be prohibitively expensive.

But you get a wheelchair for free!

Yes, I have an NHS wheelchair but that does not meet all of my mobility needs.  I'm not sure what picture comes into your head when you think of a wheelchair, perhaps something lightweight and sporty like wheelchair basketball players use?  The kind that Wheelchair Services usually hand out are the big heavy old fashioned looking chairs that you'd find pensioners in nursing homes sitting in.  They are heavy, they are difficult to propel even if you are relatively fit.  I can't push my chair more than a few feet, and that's indoors on a smooth, flat surface.  They are also difficult to fit in a car so going anywhere is a challenge plus it's difficult coming to terms with the loss of independence if you need someone to push you everywhere.

If you don't like your NHS chair there are other options, but that will cost you extra.  There is the voucher scheme where they will give you a voucher for the value of a standard NHS chair and you can pick whichever chair you want but you have to pay the difference and you can only use the voucher at certain approved suppliers.  You can buy your own wheelchair but something ultra lightweight and sporty can set you back up to £4,000!

If you can't propel a wheelchair yourself  there is always the option of a powerchair but don't expect to get one on the NHS unless you are a full time wheelchair user and it is impossible for you to self propel.  And even if you do get a powerchair on the NHS they will only usually provide one for indoor use.  If you want to move around independently outdoors you will have to buy your own suitable powerchair and than can cost between £2,000 and £8,000.

Mobility scooters are a slightly cheaper option.  Starting at around £500 you can buy a car boot model which will dismantle and fit in a car boot.  These are great for nipping around the supermarket but they have limited battery life and are not great on pavements or uneven surfaces.  Larger scooters can cope with most terrains but they cost more, up to £8,000 and of course they won't fit in your car so you would need a van or a trailer if you wanted to use it away from home.

If you can't afford those prices you can lease a chair or scooter through the Motability scheme.  For a £100 deposit you can use between £20 and £55 of your weekly Enhanced Mobility Component of PIP or Higher Rate Mobility DLA allowance, but only if you're not using it to lease a car.

But you get a car for free!

You can get a car but it's not free.  If you apply for a Motability car you get it instead of your mobility payment so it costs you £57.45 a week.  The government has made it harder for people to do this by changing the eligibility criteria for PIP so if you can walk more than 20 metres you're not disabled enough to get a Motability car.

Some cars also require a non-returnable advance payment. The smallest, most basic cars have a zero advance payment but if you want something big enough to put your wheelchair or scooter in you may have to pay up to £9,000 up front.

But you get house adaptations and equipment for free!

No, not unless you're on means tested benefits.  There are grants available if you meet the eligibility criteria but if you have savings or a partner who works then you will have to fund adaptations and equipment yourself.  I have been assessed as needing a stair lift but because my husband works full time the OT told me it would cost £9,000 which is well beyond my means, so when I'm having a bad day I have to crawl up and down the stairs.  

I also need a bath lift.  I was offered one on loan but I turned it down as it did not meet my needs.  The OT recommended a different kind, but their department didn't supply them so I'd have to buy my own, at a cost of around £600.  I was also expected to purchase other aids such as an Easi-reach grabber and suction cup grab rails as the walls in my house were not suitable for the permanent ones the OT department supply.

So as you can see having a disability isn't the free meal ticket that some people make it out to be. Disability benefits such as PIP are there to help people with the added cost of living with a disability and those costs can run into thousands of pounds.  

There will always be people who would rather sit at home watching their big TV, but when you think about how it would cost them tens of thousands of pounds for an electric wheelchair and an accessible vehicle just to allow them to get out of the house then maybe £500 for a TV that provides them with entertainment and a window to the world outside then it doesn't seem quite so extravagant after all.

Wednesday, 9 September 2015

Tricks of the trade - Equipment for living EDS and POTS

It can be difficult coming to terms with using disability aids when you have a chronic illness like EDS or POTS.  I started using a walking stick when I was 18 and everyone assumed I had some kind of injury because everyone knows only old people are allowed to use walking sticks!  It was difficult to explain how I was chronically ill but I've learned to accept that sometimes disability aids can make your quality of life a whole lot better.

Some aids are more useful than others, and what works for one person may not work for another but I thought I'd share some of the things that work for me.

Mobility Scooter

I started using a mobility scooter 13 years ago.  Before then my poor husband had to push me around in my wheelchair and we both hated it!  It was hard work for him and even though it allowed me to leave the house I still didn't feel like I had full independence.  That all changed when I got my scooter.  I could actually leave the house on my own for the first time in 10 years!

I've had a few scooters over the years.  I currently have a Pride GoGo Traveller Elite 3.  It's small enough to fit in the book of a Vauhall Corsa but has enough power to get me around.  I would be lost without it.

Smart Crutches

I started using a walking stick when I was 18 years old.  My physio gave me an ugly grey NHS stick.  It was heavy and made a loud click every time it touched the ground.  I hated it but it was a necessary evil.  I got fed up of it pretty quickly and bought my own walking sticks but some were better quality than others and I had a habit of breaking them.  I fell in love with SwitchSticks walking sticks, I had a couple of different designs but my physio said I was an accident waiting to happen and gave me NHS crutches.

I was back to using the ugly grey walking aids until a friend told me about Smart Crutches.  They are an improved design that is very adjustable and supports your forearm which takes pressure of your shoulders and wrists, which is a big problem with standard elbow crutches.  They also come in a variety of colours - not just NHS grey.

I got a pair of petite Smart Crutches in purple and I love them.  They are quite heavy and I don't use them all the time but when I do I always get positive comments, especially from health care professionals.  They are not cheap at around £90 a pair but they are miles better than standard elbow crutches.

You can buy Smart Crutches from the website

Grab Rails

Social Services sent an OT around to assess my home.  He said I needed grab rails but because I live in a new build house with plasterboard walls he couldn't safely install them.  I was left to look for an alternative and I found one - suction bath grab rail.

The suction cups allow it to be placed on any smooth, flat surface, such as the tiles in my shower.  I can adjust the position so I can get it in exactly the right place and the switches make sure it stays there.  The best part was the price - at only £6 it was a bargain!

I've been using it for a few months now and it's not let me down yet. The manufacturer does recommend testing that the grab rail is secure before using it, I don't know how long the suction cups will last but when they do finally degrade it's not too expensive to replace.

Shower Seat

I was struggling to stand in the shower so my OT loaned me a shower seat.  A few years ago I'd been assessed as needing one but the OT didn't think they had any which would fit in my tiny ensuite shower. Lucky for me they had some corner shower seats.

It's a tight squeeze to get the door closed and it's not a very stylish piece of furniture but at least I've reduced my risk of falling over in the shower, which is good.

7 Day Pill Box

This is an incredibly useful bit of kit.  I honestly don't know how I managed without it!  I am on quite a few prescription medications and I also take quite a few vitamin supplements too.  It was getting confusing remembering the dosage and times of all the pills, sometimes I'd forget if I'd taken them at all and I was in danger of under or even overdosing, so I forked out and bought an Anabox 7 day pill box.  It wasn't cheap at £17 but it has been very good value.

Every week I fill it with my tablets and now it's easy to see if I remembered my lunch time dose of painkillers.  Each day comes in a separate box so if I'm going out I can just take that section with me.

The morning section is larger than the others, as most people take more tablets in the morning.  There are sections for morning, noon, evening and night, as well as an 'are required' section for any extras you might need.  It's simple and brilliant!  The only bad thing is having to fill it up every week.  Popping 140 tablets out of blister packs takes it's toll on bendy fingers!

I have a great local pharmacy and they have offered to make up my prescriptions into blister packs, which are very similar to this pill box, but as my medication can change on a weekly basis and I occasionally require more or less of some medications I prefer to be in control and do things this way.

Elastic Shoe Laces

A friend gave me a tip about these.  My podiatrist advised me to wear supportive trainers so stop my ankles rolling and prevent me from spraining my ankle.  They work but it's a chore having to tie the laces.  Elastic laces allow you slip your trainers on and off with ease.  I honestly don't know what I did without them.  They are relatively inexpensive to buy and come in a variety of colours to match your favourite trainers.  Available from sports shops and eBay.

Derby Half Step

There is a steep step out of my back door to the path which takes it toll on my knees and hips, especially in the summer if we have a barbecue and I have to keep nipping back into the kitchen.

I considered building a step with bricks and pacing slabs but that would have made it difficult for my husband to get the lawn mover around the back of the house so I searched the internet and found something called a Derby Half Step.  It's designed, as the name suggests, as a half step to make steep steps a little more manageable for less able bodied people,

I chose a sturdy plastic step with adjustable feet and a rubber mat.  I had to shop around for a good price, I bought mine for £60 but I saw them selling for as much as £130.  It has made using the back door much less painful and has been a worthwhile investment.

You can get a cheaper version for around £20 but I decided against it after reading many negative reviews about the steps cracking and breaking after a few months.

Recliner chair and footstool

I think everyone needs a comfortable chair, regardless of whether they have a disability or not.  I indulged in a recliner chair and footstool to improve my posture and to allow me to relax.  I need to keep my feet raised to relieve my POTS symptoms and sitting in a normal armchair with my feet on a box footstool wasn't great for my posture.  I went to a local furniture shop and tried out loads of recliners, most of which I didn't like, but I did find one - the Shangri-La Swivel Recliner and Footstool.

The chair swivels so I don't have to turn my neck to talk to people sitting opposite me on the sofa and the footstool is angled which allows me comfortable rest my legs.  It's the most comfortable chair I've ever sat in!  It was a relatively cheap chair compared to other chairs on the market, the fabric is already staring to wear on the footstool but my budget wouldn't stretch to a leather Stressless.  Maybe one day...

A Final Note

Disability aids can be very expensive.  If possible try them out at a disability showroom to see if they work for you before committing to buy, then shop around on the internet for the best price.

Some aids are available from your local Occupational Therapy team, such as shower seats and grab rails so ask for an assessment to see if you're entitled to any help.

Mobility aids can be very expensive and the NHS are not always able to provide the best equipment to meet your needs.  If you are in receipt of DLA higher rate mobility or PIP Mobility enhanced rate you can lease a powerchair or mobility scooter through the Motability Scheme.

Friday, 7 August 2015

I've got a wobbly knee cap!

Knee pain has been a big problem for me since I was a teenager but it's not something anyone ever investigated properly.

When I was fourteen years old I suffered a severe chest and sinus infection that caused a high fever and suspected brain swelling.  A few weeks later I became ill again, telling my mum that my knees hurt and I couldn't go to school because I had the flu.

When I was fifteen I was diagnosed with Myalgic Encephalomyelitis because no-one knew what was causing my malaise, joint pain and fatigue.

When I was eighteen I was admitted to hospital with severe pain in my joints, including my knees.  The doctors didn't know what was wrong as my blood tests came back normal.  They suggested my problems were psychosomatic because ME was fashionable at the time.  My GP wanted me to see a rheumatologist so my parents took me to see a private doctor.  I suffered a particularly painful examination and the doctor declared there was absolutely nothing wrong with my joints.  He admitted to knowing nothing about ME but suspected it was psychological and was he was insistent that I should stop using a wheelchair and get more exercise.

The pain never went away.  I started using a walking stick as I was unstable walking and I was referred for physio but that made my body weaker and my pain worse.  By the age of 20 I had to use a wheelchair outdoors as I could no longer walk any distance without severe pain and fatigue.

I continued to have problems with my knees and six years ago after a bout of strep throat I had a massive flare of pain which was diagnosed as post streptococcal reactive arthritis.  The pain persisted in my right knee and a local GP sent me for an x-ray but it came back as 'normal'.  The pain was blamed on 'wear and tear' and I was told it was something I'd have to live with.

Everything changed when I was finally diagnosed with Ehlers Danlos Syndrome.  Suddenly my complaints were taken seriously rather than being dismissed out of hand.  A few weeks ago I mentioned my knee pain to my GP.  I had been suffering swelling and tenderness under my right knee and a tender lump behind it.  She sent me for an MRI scan to investigate the problem.

When I phoned the surgery for the test results I was given a vague message, 'Consistent with Ehlers Danlos syndrome.  No further damage'.  I was a bit disappointed.  It didn't really tell me anything and I thought my problems were going to get swept under the carpet and ignored once again.  I made an appointment to speak to my GP about the results and what I found out I have a wobbly knee cap!

After 25 years of problems I finally knew what was wrong.  My patella showed lateral tilt and subluxation which could be due to patellar instability.  I had a slight patella alta, dysplastic flattened trochlear notch and early patellar chondromalacia.

In English that means my knee cap is at a funny angle, it's too high, there is no grove to keep it in place when I bend my knee so it partially dislocates, and the back of my knee cap is worn down more than it should be.

This fits with my diagnosis of Ehlers Danlos Syndrome and explains why I have found it so difficult to walk and exercise.  I don't have a fear of moving or hypersensitivity to pain, I actually have a physical problem.  It's news I didn't want to hear but it is reassuring after so many years of disbelief.

The next big question is what can I do about it?  I have been referred to an orthopaedic surgeon to discuss my options.  In otherwise healthy people they would do surgery to correct the problem but EDS complicates things and could potentially make things worse.  It looks like I have some hard decisions to make but I'm hoping I will be given a few options regarding my potential treatment.  I am frustrated that it has taken this long to find out what is going on but at least now I have a way to move forward.

Friday, 3 July 2015

Sam's Amazing Loom Band Challenge

Words cannot describe how proud I am of my nine year old son, Samuel.  Early this year he came to me and said he wanted to help people with EDS.  He'd had an idea, he loved loom bands and he wanted to make a 500 metre long band in a fundraising challenge for Ehlers Danlos Support UK.

I thought it was a wonderful idea so we support Sam the best we could.  He already had quite a collection of loom bands but we calculated we would need tens of thousands of bands to complete the challenge so we started buying up bulk packs of loom bands on eBay.

Sam worked incredibly hard, every spare moment he tirelessly worked on his project.  Every morning, every afternoon when he came home from school, every evening after tea.  He showed such dedication I knew he would reach his target.

I set up a Just Giving page for him and we put out requests for any unwanted loom bands.  We had an amazing response, including a very generous donation from a boy who had been making loom bands for a local hospice charity.

Despite being quite poorly in April with a chronic cough Sam continued his challenge.  We measured his now giant ball of loom bands on the pavement outside our house and he was almost half way there!

Measuring the loom bands proved another challenge.  I made Samuel a measuring wheel out of cardboard and Kinex and with the help of his friends and my PA we measured the now giant reel of loom bands.  475 metres!  Almost there!

Sam didn't give up.  When his friends came to call he would tell them he was busy finishing his loom bands and I'm very proud to say he reached his target.  All by himself he had made a loom  band over 500 metres long!

Ehlers Danlos Support UK were very kind and sent Sam a certificate to mark his achievement.  Sam wanted to make a video to thank everyone for their support.

Sam's next challenge is to reach is £150 fundraising target.  Can you help?  Please visit our Just Giving page:

Tuesday, 5 May 2015

Ehlers Danlos Awareness Month

May is Ehlers Danlos awareness month.  On social media every month seems to be an awareness month for something so why should you be made aware of Ehlers Danlos Syndrome? The simple answer is you need to be aware because most doctors aren't.

If you suffer with joint pain, fatigue and are hypermobile you may have EDS and not even know it.

EDS is a genetic connective tissue condition that is a multi-systemic syndrome.  That means if affects just about every part of your body, you skin, your joints, your muscles, ligaments and tendons, your internal organs and gastrointestinal tract.  Everything!  I causes pain, disability and the vascular type can be fatal.  There is no cure.

EDS is invisible.  You can't see it and it doesn't show up on blood tests so it's very difficult for doctors to diagnose it.  Getting a diagnosis is especially challenging because most doctors do not have current information about it.  I recently spoke to a doctor in Accident and Emergency.  He said he knew all about it, then he quoted information that was inaccurate and at least 10 years out of date.

Doctors are taught about the extreme symptoms, the super stretchy skin, the permanently dislocated joints and the fatal aneurysms of the vascular type.  They are told that EDS is one of those rare diseases that if they ever see a single case in their career, they will never see another one.  It's no wonder they are reluctant to diagnose EDS!

I have hypermobility type, it's the most common type and it's diagnosed by the presence of hypermobility and pain.  Some people are naturally hypermobile and are perfectly healthy but if the hypermobility causes pain and soft tissue injuries then EDS may be diagnosed.

The Beighton Scale is often used to diagnose EDS but it only assesses a few joints and was never meant to be used as a diagnostic tool.  This means that some people are told they don't have it because they don't score enough points.

I am very hypermobile in my ankles and shoulders but as they are on the scale they don't count and I was told I didn't have EDS, but when I was examined by an experienced doctors at The Hypermobility Unit in London I was diagnosed.

EDS also causes many other problems, which makes it difficult for doctors to diagnose us.  How can we have so many things wrong with us?  We must be hypochondriacs!

EDS patients can suffer with dizziness and fainting when we stand which is caused by Postural Orthostatic Tachycardia syndrome.  EDS patients suffer with chronic pain from partial dislocations, bursitis and muscle spasms, we injure ourselves easily, we might be clumsy and we bruise easily too.  Some patients suffer slow gastric transit, nausea, constipation and even gastrointestinal failure.  Basically think of a body part, if there is collagen in it then EDS can affect it.

There are several other kinds of EDS, including classical type which causes skin problems and the vascular type which sadly can be life limiting.  It can affect people in different ways at different times. One day you may see an EDS patient in a wheelchair, the next day they can be walking.  They aren't faking it or doing it for the attention, they are struggling with a complex condition and doing the best they can.

So why should you be aware of EDS?  Because more research needs to be done to help people with this complex and incurable condition and it's not as rare as doctors might think.  For a start, it's genetic and there is a 50% chance the children of an EDS patient will also have EDS.

Perhaps you know someone with ME, CFS or Fibromyalgia who is hypermobile and fits the EDS profile?  Being aware of EDS can mean getting the right diagnosis and that might just change their life.

If you want to know more about EDS visit the Ehlers Danlos Support UK website.