Blog Post | EB and ME

My name is Dan Townley, I’m 24 years old and I have a rare skin condition called Epidermolysis Bullosa. You probably haven’t heard of it, which is completely fine, so in this post I’m going to tell you a bit about it.

 

So, WHAT IS IT!? Well, Epidermolysis Bullosa (or just EB) is a rare skin condition that causes the skin to blister and tear at the slightest touch – painful open wounds and sores form where the skin is damaged and in some severe cases internal linings and organs are also affected.

There are three main types of EB:

 

  • Simplex
  • Dystrophic
  • Junctional

 

And each type of EB has a subtype it is thought there are over 30 subtypes or variants that are recognised today.  The type of EB I have is Simplex and the Subtype is Dowling Meara

 

EB can be inherited in either a recessive or dominant form – YOU CANNOT ‘CATCH’ EB BECAUSE OF CONTACT WITH A PERSON WITH IT. Now,  I say this in capitals as this is the question that comes up more times than any other question.

 

Dominant EB occurs when one parent carries the defective gene. They are usually affected by the condition themselves. (There is a 50% chance of passing EB to your children if you have EB)

 

The Recessive form is usually totally unexpected as both parents can carry the EB gene without showing any symptoms of the condition themselves. (There is a 25% of passing this to your children)

 

What does this mean for me? Well it means that there’s a 50/50 chance that any future children I have will have EB. I usually find this fact to be a bit of a tough subject to talk about as it’s not much of a chat up line, is it?

Hi, my name is Dan … Oh and by the way … if you’re planning on having children in the future, just to let you know that if you have a child with me there’s 50% chance that the child will have a skin condition that you have probably never heard of but will have to learn about pretty quickly so you can do their skin treatments.…”

Thankfully I’m in a relationship with somebody who has completely embraced EB and often finds herself as a makeshift nurse helping with blisters or sores that I can’t reach – this is another key thing for me. Everybody in relationships has floors, when yours is a condition that means your skin opens up at any given moment it’s important to have somebody there who truly can accept you at some of your lowest points and still make you feel loved and make you feel you aren’t getting on their nerves! (Soppy, I know)

 

It is a constant battle to keep your skin as ‘best’ as it can be to avoid any infection in open wounds or blisters. This means the daily routine can include but isn’t limited to:

  • Bathing in medicated waters twice a day (my favourite is Potassium Permanganate as it makes the water a cool purple!)
  • Lancing (popping) blisters with sterile needles
  • Applying a number of different creams to different areas on your body (twice a day)
  • Bandaging/dressing open wounds to ensure infection doesn’t occur (twice a day)

 

My collection of medical supplies grows and grows as I always have to be prepared for a worst-case scenario. It is filled with bandages, medical tape, creams, foot balm and sterile needles. I definitely could give a pharmacy a run for their money!

 

One of the hardest things about living with EB isn’t even dealing with the above. It’s sometimes having to put a smile on your face and pretending everything is okay, despite not being able to walk, or sit still, or even eat/drink without being in severe pain. Thankfully it’s not always like that for me – but talking about it helps me to accept that not every day is going to be perfect.  Sometimes you have to adapt your life around protecting your skin and whether that’s working with your employers to have a relaxed uniform policy or having friends that know when you’re struggling to keep up the pace when you’re walking around and slow down without making you feel like a hindrance to them.

 

According to the DebRA website they estimate that there’s only 5,000 people who have EB that are living right here in thein the UK with an estimated 500,000 worldwide.

 

Oatcake Day and 6 Towns Radio have teamed up for the Oatcake Day LIVE event this August 8th 2017. They will be raising money and awareness for Debra and it would be great to see you there. Live music will be provided by Jake McKechnie (The Voice Kids UK Finalist), Ollie Marland, Jason Dale as Elvis Presley, Jordan Pemberton, The Hewitts and Dan Budd as Robbie Williams!

 

If you have any other questions that you would like to ask me about EB come and speak to me on the night or feel free to drop me a message on twitter (@Dan_Townley)