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My name is Rob Blackwell, I live with the condition Ankylosing Spondylitis, an autoimmune disease.

https://riding-with-and-for-ankylosing-spondylitis.org/

https://www.facebook.com/Riding-With-and-For-Ankylosing-Spondylitis-1948191395468747/

https://en.wikipedia.org/wiki/Ankylosing_spondylitis

I have chosen to raise donations for NASS of UK, National Ankylosing Spondylitis Society, .

Sponsors and Partners I have to support 'Riding With And For Ankylosing Spondylitis

Schwalbe - Tyres

For-Cyclists – Race Clothing

All Mountain Style – Bike Protection

URGE Bike Products - Helmets

Isodore – Cycle Clothing

Hexlox – Bike protection

Squirt Lube – Lubrication, Tyre Sealant

XShifter – Electronic Gear Shifters

Zee Zee Merino – Base Layers

Endura - Clothing

Milkit -  Tyre Equipment

Threshold Endurance Sports / Shawn Hodges – Coach,
Training Plans

K.A. Engineering – Chainring’s, Jockeys Wheels

High 5 – Sports Supplements

Dyno Velo – Power Meter

in our aim together to bring more awareness to the condition of Ankylosing Spondylitis.

Ankylosing Spondylitis the condition.

Although the exact cause of AS is unknown, we do know that genetics play a key role in the disease. Most individuals who have AS also have a gene that produces a "genetic marker," a protein called HLA-B27. This marker is found in more than 95 percent of people in the Caucasian population with AS. It is important to note, however, that one does not have to be HLA-B27 positive to have AS. Also, a majority of people with this marker never develop Ankylosing Spondylitis.

Ankylosing Spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort.

In more advanced cases this inflammation can lead to ankylosis -- new bone formation in the spine causing sections of the spine to fuse in a fixed, immobile position. AS can also cause inflammation, pain, and stiffness in other areas of the body such as the shoulders, hips, ribs, heels, and small joints of the hands and feet. Sometimes the eyes can become involved (known as iritis or uveitis), and rarely -- the lungs and heart can be affected.

The hallmark feature of Ankylosing Spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease. The SI joints are located at the base of the spine, where the spine joins the pelvis.

My Ankylosing Spondylitis

I was diagnosed at 14, when one evening I couldn’t move. Since my diagnosis, I had no problems/flare ups from AS at all. Until 2011, when I slipped two discs. During the past 6 years the pain got worse and worse, until unbearable. After seeing my family doctor over and over, to only be prescribed painkillers. I finally got referred to an Orthopedist, after looking at the X-rays, he could see that it wasn’t the slipped discs causing the pain, AS fusion had started. This being the real cause of the pain. Perhaps the slipped discs being diagnosed had masked an AS flare up and the fusion starting. After seeing a Rheumatologist, after a new MRI. The MRI clearly showed that two lowest vertebrae, had fused completely. With the next two starting to fuse, with these vertebrae having no disc left between them. I now have pain in my hands, sometime feet, both hips and ribs and sternum, shortness of breath and sometimes, blurred vision, extremely light sensitive eyes and chronic fatigue.

I have now been in contact with many other suffers of AS on forums, Facebook pages and have researched this condition. I have now found a
specialist in AS in Austria. The next stage is to find a medication that will
help slow the progress of the condition and ease the pain. As of yet there is no know cure.

I am now 48, married with 3 children. In the past I have always stayed very active, running in half and full marathons, fell running, Sprint/Olympic/Ironman triathlons, mountain bike and x-country biathlon skiing, all in my pain free days. I have now returned to art and design, after running guest houses for 15 years. After what we now know was a flare up and fusion, the guest house became too much for my body. So now I work from home and the stay at home father for our boy Finn. And fighting my AS through cycling, diet and determination, work on the ‘Riding With And For Ankylosing Spondylitis’ project hopefully will help bring awareness for AS and help in some way other suffers.

My Aim with ‘Riding With and For Ankylosing Spondylitis’

Exercise is the best known therapy for A.S. My chosen sports over the past three decades, have involved competitive cycling, Ironman triathlon, mountain biking, biathlon and running. I have found cycling, both road and mountain bike, not only a passion of mine and will help slow the progression of A.S. The cycling does relieve the pain, almost as soon as I get of the bike. With virtuallyno pain at all, while riding either discipline.

So now I have chosen cycling as my A.S. exercise for therapy. I would like to not only like it to slow my A.S. progression, but I would like to
use my cycling, to help make more people aware of the condition. I would like to motivate other suffers, that cycling can possibly help them too. I am going to use the training/exercise therapy to help me compete in various forms of cycling events, ‘Riding with and for Ankylosing Spondylitis’. Raising awareness, raising donations for The NASS – National Ankylosing Spondylitis Society, and perhaps one day even a cure.

My aim is raise awareness of the condition through doing the events. Also to produce a cycle jersey with the ‘Riding With and For Ankylosing
Spondylitis’ logo, along side sponsors and partners logos. To ride therapy, train, ride events and race wearing the jersey. I would like the cycle jersey available for other suffers and supporters to wear, to spread awareness for A.S. worldwide. Along with other items, t-shirts, sweatshirts  to spread the word. To eventually to make a world wide cycle club, for riders with AS and supporters. I want to spread the word about cycling to other suffers, of the low impact benefits of cycling to other suffers of A.S. I have already made a Strava club for ‘Riding With and For Ankylosing Spondylitis’, to help motivate each other.

 Social Media

Facebook - https://www.facebook.com/Riding-With-and-For-Ankylosing-Spondylitis-1948191395468747/

Website – https://riding-with-and-for-ankylosing-spondylitis.org/

Strava Account - https://www.strava.com/athletes/1370607

Strava Club - https://www.strava.com/clubs/306367

Instagram – https://www.instagram.com/robwblackwell/

Twitter - https://twitter.com/BikerBlackwell 

You Tube Channel - https://www.youtube.com/channel/UCPG7xAaRgppTn8SzoXT0XAQ?view_as=subscriber

I will document my training, the events, any A.S. diets and medications I try. I will share any articles I find interesting for suffers and supporters. I will share my Strava rides, make movies – vlog, training and events. I will share riding/training advise I have found useful. I would like to motivate other suffers to get moving and exercise, a necessity with A.S.

The partners and sponsors will receive regular updates from me on the projects progress, how my condition is progressing, how the training is going and of course how the events/races go.

You would be joining these generous companies in our goal to bring Ankylosing Spondylitis to the forefront of awareness, perhaps with the awareness and funds donated we together can make a difference.

The Events

Events I am interested in competing in for, 

‘Riding with and for Ankylosing Spondylitis’. 

All events will all be dependent on my conditions progression. But I want to make them a challenge, something to push all barriers and have some noticeability as to bring more awareness and charitable donations. Here are some I will be training for.

9/6/18 – Bike Festival Achensee, Strecke D
: 77,1 KM/ 2.370 hm

29/6/18 – The Zillertal Bike Challenge, Austria. A
three day stage race mountain bike marathon, in 2018.

UCI World Mountain Bike Marathon Championships course race,
Italy, 2018

The Masters/Veterans World Time Trial Championships in 2019.

One or more of the following in the following years:-

Perskindol Swiss Epic.

Mountain Bike Transalp.

The race around Austria.

Race across Italy.

Race across Germany.

Race Around Ireland.

I look forward to hearing
from you

Regards

Rob Blackwell