Things that people may not know about EB
So since this is my first post I wanted to write something so that people out there would get to know me, but also about my condition. I was lost on where to start with my blog and with the help a big thing that popped up was how many people are unaware of the experiences of living with this condition and how a lot of the time it’s hard for people to understand. These are things are most common I feel that I have noticed that are not known by other’s and are at times misunderstood. I want this to be seen in a positive way and I hope that anyone who reads this gains a better understanding and awareness of what it is like growing up with this condition and if they ever come across anyone else with EB they may find this useful as although this is my personal experience they can also be very similar among other sufferers from getting to have close relationships with others and some of these mentioned I know are relatable to them aswell. So please give this a read and here goes nothing.
Epidermolysis Bullosa is a very rare genetic condition. To my knowledge only it has been estimated that only 1,000 people in Australia suffer from this condition. There is not exact number as there are more people being born with this condition all the time and they may not have access the current support group known as DEBRAA which provide much needed money for research and individual assistance to families. There are many different verities and sub-types of EB. Along with this each different type brings about its own sets of challenges and issues. These sub-types are just to name a few:
Simplex: This is known as a milder form of EB. Blisters are most commonly on the feet and hands but in some cases, can be widespread.
Junctional: This is a more severe type. Large ulcerated blisters form throughout the whole body and can be fatal because of the constant risk of infection and loss of body fluid.
Dystrophic: Can range between mild and severe. Blisters appear on the hands, feet, elbows and knees. This type of EB is more prone to a specific type of skin cancer in severe cases.
( I have attached a link that goes into greater detail about all the different subtypes)
I have been diagnosed with Recessive Dystrophic Epidermolysis Bullosa. The main areas that are constantly covered with opened wounds and blister are my underarms. Because they don’t heal it can cause a lot of scarring and discomfort. Different individual with EB most commonly have different ‘problem’ areas as I like to call them. My underarms and feet happen to be mine. Funnily enough at birth I was actually diagnosed with the wrong sub-type of EB which in the end made sense as I got older and wounds were not healing like they used to, go figure!. This came with it’s own set of new complications. Also be mindful that some sufferers condition may be more ‘obvious’ than others. I don’t like to put those with this condition in boxes as I believe that every single one of us are faced with different challenges that they struggle with. No one person is the same but all need support.
We are still able to do most things others can do. Even if we do it differently to others. I feel that instead of playing sports and focusing on things that I am able to do I found a niche that
suited me perfectly. I happen to be fortunate to be able to go to university and study Criminology and Justice. I completed my Bachelor’s degree and currently doing my Master’s degree and will be graduating in December. (Thank goodness, I finally made it and my emotional and mental levels were tested to the max). I also have a passion and a slight addiction to makeup (My poor partners wallet).
The one thing hidden and less known with EB is that it also affects our bodies internally as well. For me I constantly have blistering and ulceration’s in my mouth. My throat also at
time narrows and makes me choke on the tiniest bits of food. This really affects my self-esteem and got to the point where I would not eat in front of friends in fear that I would choke and not be able to breathe. Long-term effects can also cause damage to the kidneys and liver. Some warriors also require nourishment through tubes in their abdomen as they just can’t get the nutrients and medication without pain and difficulty. This has often been likened to eating barbed wire. As EB warriors (which we prefer to call ourselves because well.. it sounds bad-ass and hell yeah, we definitely deserve it) we have a certain drive and strength that can only be found within us. Even though we have been dealt a very tough hand our sassy attitudes and humour seem to get us through. We all stand tall even though sometimes we don’t have the energy. We don’t want to be labelled the sick sister, brother, child or friend. We earned our butterfly wings for a reason.
One of the main factors of EB is pain. It is the monster that can break and frustrate us at times. To deal with this comes a lot of medications and sleep. As much as I love going out with friends there are just times where physically this is just going to happen (yep when your mind says party time and your body says nice try but we are in for a long night of comfort food and binge-watching Netflix). And please understand even though I may not look like I’m in pain I truly am and just as upset and frustrated about being stuck at home instead of being able to dress up and socialise. Also at times with this condition I have found myself very isolated. At school, I was constantly bullied and made to feel as if I didn’t belong. I was unable to play sports with fear of getting hurt. In primary school, I had to wear lycra gloves to protect my hands and has a integration aids watching out for me (There is one amazing lady in particular and I still appreciate everything she has done for me). I never fitted in and by Year 10 I had no idea what having friends meant. When you’re younger it is hard to explain to people around you why you can’t do certain things.
My wish would have been that there was more awareness and people took the time to ask those sometimes-confronting questions and bullying was dealt
with a lot better as this still has lasting affects even to this day with constant anxiety and depression. Lastly to end this on a positive note being and EB warrior is part of me but does not define me. I am finally learning to love myself and I wouldn’t be the person I am today if it weren’t for my condition. I have learnt to never judge people by what they look like and every person
has their own challenges. I’ve also learnt to be a strong and brave woman because I have to be but I wouldn’t have it any other way.
Much Love xo