Yes. The race sounds insane. And yes, I am very nervous about it. Of the cohort who ran it last year, 32% did not finish. The Pennine Way, the Spine of England, all 268 miles of it! A 24-hour cut-off time to reach each checkpoint and maximum six-hour stay at the checkpoint including eating and sleeping. It’s a big challenge but I’m putting myself through it because I am doing it for a good cause!   

This time, I'm trying to raise awareness and money for National Axial Spondyloarthritis Society (NASS), the only charity in UK dedicated to the care of patients who have Ankylosing Spondylitis (AS) --  a form of inflammatory arthritis that most commonly affects the spine.

And this time, it's personal. Because I, myself, have AS.

I’m telling my own story below not to ask for sympathy, but to share my experience to raise awareness of this disease. Because AS symptoms are invisible to others, mostly including severe fatigue and pain caused by inflammation, it is very difficult to communicate its impact to the people around you. And because people don’t know what AS is, it’s often being dismissed as arthritis and not given enough attention and care. 

According to NASS’s statistics, one in 200 of the adults in the UK have AS and the average delay to diagnosis from when symptoms start is around nine years, by which the irreversible damage to the spine may have occurred already. 

And it’s a condition that affects young people too. Symptoms start in late teens to early 20s with average age of onset being 24. In addition, 59% of the people with AS experiencing mental health problems. 

If you would like to support my fundraising campaign, any amount of money is welcome and appreciated. But whether you decide to donate or not donate, I hope you could help me to share the story to raise awareness for AS. The more people know about this disease, the more support we can get, not just in cash, but also understanding and care. 

For NASS, this is what they can secure with the cash

• £50 allows their team to provide 1:1 welfare and benefits support for someone living with AS
• £100 runs their weekly session for assisting people with AS to manage between treatments 
• £200 helps up to 20 people to learn how to better manage their pain, fatigue and sleep
• £500 gets you a combination of everything listed above!

(any donation given on this page goes directly to NASS)

---------------------------------------------------------

Below is my own story with AS:

I started to have lower back and hip pain when I was 26 and could not figure out what it was. The pain came and went with no obvious reasons, but when it was bad, it was really bad. Back then, I lived by myself. Lying in bed at night, if I wanted to turn my body because it was becoming stiff, I had to hold the headboard with both hands and make the turn inch by inch. When I got up in the morning, I couldn’t stand up straight. Sometimes I had to hold on to the wall to walk talk because of the pain. And it normally took me an hour to gradually be able to straighten my back. I would have no energy at all, not even for speaking. For someone who has  loved sport since childhood, it was extremely frustrating. 

For three years, I was treating it as if the back pain was probably caused by exercising. One day, in hospital, my mother overheard someone talking about AS and she asked me to do the test for it just in case. In 2007, I was officially diagnosed with AS. 

Since there is no cure for AS, one can only managed the inflammation with medication. The doctor put me on steroids. The side effects were so bad sometimes I wondered whether I would be better off not knowing what condition I had and just returning to the pain. I became depressed and felt sorry for myself thinking life was not fair (in part because it’s a generic auto-immune disease, apparently from my father’s side of the family).

After five years of struggling between the pain and the side effects from steroids, I finally decided to switch to a biologic treatment called Humira. It worked like a miracle and my pain vanished after the first injection. But back then in China, it was also very expensive - close to £900 per jab and I needed one jab every two weeks.

But still, I was the lucky one. 

I’ve been there myself and I know how bad it could be. So for anyone who has AS, I also want to tell you, do not give up. Stay positive about life and never let it stop you from pursuing your dream. 

Since I started the new treatment, I feel I have got my life back. (Although I still suffer from episodes of iritis from time to time) So far, I have done four marathons including  one in Antarctica and one in the North Pole. I’ve scaled three of the seven summits and now I’m challenging myself with this 268 miles Spine Race. 

And now, with 50 days before my race starts, I need to get back to my training! Stay tuned for updates!

Thank you very much! 

Beibei xx

More about my charity work and funding raising experience:

In 2016 I joined a team of cardiac surgeons from Italy as a non-medical volunteer and spent 10 days in a field hospital in Tanzania, I witnessed how charity helped save children’s lives first hand. Then in 2018 I signed up for a corporate boxing fight in Singapore and raised over $5,000 for Mending Kids, a charity based in US to provide critical surgical care for sick children around the world. Last year, when Covid-19 was at its peak in China, I helped to raise £4,500 to buy medical protection suits and masks desperately needed in hospitals in Wuhan., China. Those were the times I really felt a deep connection with other people and I was really happy that I could contribute. And this year, coming to England, the country that will be home for the next few years, I signed up for the MONTANE Summer Spine Race and I’m now raising money for their official charity partner - NASS. 

https://nass.co.uk 

More details about the race here: 

https://thespinerace.com/route-description