By Kai Mascord

Hi I’m Kai, I’m 20 years old and I live with epidermolysis bullosa simplex, or EBS. EBS is the most common and can be the less severe form of EB, however it still has a huge effect on my life, including playing sports, and my passion: football.

My mum first noticed blisters on my feet when I was four months old whilst we were on holiday. Each year during the summer months, blisters kept appearing on my hands and feet, and cuts to my knees took a long time to heal. At 18 months, my mum consulted with our GP about the wounds appearing on my knees due to the time they took to heal and how much care and attention they needed to prevent infection. This started a lengthy process to the diagnosis of EB. Many trips back and forth to the doctors and they finally referred me to the New Cross Hospital to a dermatologist. It was this consultant that recognised it could be EB and referred me to the Birmingham Children’s Hospital. I was three at this point. 

On my first appointment they spoke to my mum about EB and what it was. She admits now she felt very overwhelmed and didn’t really understand EB until much later in my life and following hours of her own research. In 2006 when I was diagnosed and because of my age, they took a blood sample from my mum for genetic testing. It took a year to get the results after sending them to a lab in Scotland. This confirmed the diagnosis of EBS and a mutation in one of my keratin genes. In 2019, I had my own bloods sent for genetic testing to confirm my diagnosis (Things have come on so much since back in 2006, as this time my results only took 2 weeks).

I have two brothers; one living without EB and one who has EBS. I’m also aware that there is a 50% chance of me passing the mutation of the gene down if I have children.

EB has made it difficult for me to be able to compete in sports over the years as I mainly get my blisters on my feet, because of this I struggle to run, and even walk, as the blisters make it very uncomfortable. To be able to compete in sports I must follow a strict regime of care and bandage and strap up my feet before competing in football matches to help maintain my performance during games. Following a game, I soak my feet in two types of cream and lance the blisters before dressing them to help with recovery. With matches at the weekend and training midweek, it is often the case that I play with multiple blisters on each foot due to the time frame and the skin not having time between to heal and grow back. Managing the pain and preventing any complications makes EB a daily struggle and can impact my day-to-day life meaning in the past I have missed out on social activities with friends and family.
 

I have been very aware of my EB since a young age but haven’t always spoken about it to my peers. As a child and especially a teenager, you don’t want to be the one who is different, however schools, football coaches and friends have been very supportive. My family have been members of DEBRA since 2015 and as I have got older, DEBRA have played a key part providing informational materials for me to share with people. This has enabled them to be aware of not only what EB is, but how best to support me. It has given me confidence to make people aware of my EB.

DEBRA have also supported the family to enable us to spend quality time together and we have been to two of their holiday homes in Weymouth and Poole. These holidays not only enable us to spend the time as a family at a fraction of the price, but the accommodation is fully equipped for families living with EB. Ideal for both me and my 5-year-old brother who also has EBS.

EB is still something which so many people are unaware of. As people with EB know, there is currently no cure (I’m very excited about the new drug re-purposing trials going ahead) so caring for wounds, managing pain, and preventing new injuries is our way of life. I would like to raise awareness of EB and the wonderful work the DEBRA charity does.

DEBRA have kindly decided to help support me for my new opportunity at Newport Town Football Club which is an honour for me to represent them while playing football. Hopefully, I’ll be able to raise more awareness of EB and support for them, so that one day they can find the treatments and cures that the EB community desperately needs.

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DEBRA’s community support team have helped Kai and his family by providing materials to help explain what EB is, how it can impact everyday life, and generally being an advocate for EB. As a DEBRA member, you can also gain access to our adapted holiday homes at discounted prices and support grants to access leisure activities and for specialist products that can help improve everyday living with EB.

 

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The EB stories blog on the DEBRA UK website is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB. 

The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK.  DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.