Tell us about your life in Spain 

I have been working as administrative support handling Legal Claims and tracking their progress whilst writing up processes to enable the company to transfer their admin work to the Phillipines. I also helped with document merges, sorting database information, checking legal submissions to courts and banks, ensuring costs are tracked, helping the accountant, creating company policies, liaising with Clients and lots more.

It has certainly been a varied job, but with the work drying up and what there is being passed to the Phillipines company they have simply run out of work and I find myself looking again.

This time I am looking for freelance work and multiple clients as well as a full time job, to ensure I don’t fall into this gap again!  Having kept books for companies before and training in AAT I can work remotely on accounts to save companies money whilst I increase my Client base, and go to the office when I have a full time job.

As well as admin and bookkeeping I also cover social media management and basic website creation which I am already getting involved with for Gibraltar’s top Hairdresser, Janice, of Janice Hair and Beauty. She does my hair, and her nail tech Charli does my nails, so when she needed help it seemed obvious to put my skills at her disposal.

In my remaining time I am putting my energy and skills to use on behalf of people with Ehlers Danlos Syndrome. It is a genetic condition that 1 in every 5,000 people are born with. At its most basic it is fragile and overly stretchy collagen.

This can mean super bendy joints or it can mean lifelong pain and exhaustion with a shortened life span. The mitral valve of the heart is made of pure collagen, and is the reason why some EDS babies are still born or die in infancy.

The structure of the brain is affected too and many with EDS also have issues ranging from depression to ASD or ADHD.

At 1 in 5,000 we are virtually invisible in the medical and scientific communities. A diagnosis was only written up on the condition in 1979, and it has already been changed and reclassified 5 times that I am aware of.

Those with EDS are called Zebras. In medicine new doctors are taught if you hear hooves think horses not zebras, but we are the zebra, the rare illness, and we often find we have to educate our doctors who may be completely unaware of EDS.  We also develop significant stretch marks across our bodies when we have our growth spurts, leaving us feeling like we have zebra stripes. 

We suffer regular and recurring soft tissue injuries and dislocations from things like standing up, opening jars, stirring tea and other ridiculous things, but our super low blood pressure and ability to hyper focus are both real bonuses. We also tend to be fast learners who learn for fun and lean towards being polymaths. Many of us certainly edge towards the savant side and some are true geniuses. 

People with EDS in the public eye who speak for us all include the musician and singer Iggy Pop actress and presenter Jameela Jamil, Drag Race contestant Yvie Oddly and para triathlete Alyssa Seely. Yet most people know about EDS because of a cat with it! That’s when your invisible illness really is, well, invisible. 

One of the bits that has really upset me with EDS is that as we get older our faces melt like wax as we age. Our eyelids sag over our eyes and block our vision, and our jowels make us look like basset hounds. After having my passport and ID photos taken and seeing how bad my face had become I started to put my spare energy into researching what can be done to improve our appearance. 

It may seem fluffy to some, but women are often treated as invisible as soon as their looks go. Apparently a good brain is not enough if you don’t look like a centrefold or supermodel. Women in particular have enough problems with self esteem today, and needing to find work in later years means we have to do our best to still look good. 

EDS already means we have to watch our weight and stay as fit as we can to avoid injuries, and we are used to having to come up with coping mechanisms that are out of the ordinary and finding new ways of doing things that work for us. 

Often what doctors insist on is more harmful than listening to our bodies. Strapping or bracing out joints for example. We strap for exercise or exertion so we can stay fit, but doctors tell us to strap joints all the time, which actually results in weaknesses. They tell us never to do yoga, but many of us only manage to be upright and walking around because of low impact exercises such as yoga or Pilates. 

To cap it all we are not good candidates for surgery. We have problems with anaesthesia, our wounds heal badly and often prolapse, and face lifts can not only be ineffective, we can end up looking worse. So if I was going to effect a change I had to go back to square one and rethink skincare to be EDS specific. 

I started by looking at what products are now available. Skincare has changed so much in the last 20-30 years, and we know so much more now. But I also added in what I know about my type of collagen and how it responds along with what I have learned about body building, strength training and other muscle disciplines to come up with a regime that is safe for fragile skin and actually works. 

This has resulted in a visible improvement in my face, including having visible eyelids for the first time in my life, and is now my main reason for extending my social media networks. It’s time to share it with the rest of the EDS world, to help us avoid surgery for longer and look and feel better about ourselves. 

This is why I am somewhat evangelical about teaching the world about EDS, so I can reach my fellow Zebras and help them, and why I am filling in this interview