At the end of December, I chopped 30cms of my hair off to raise money and awareness for a skin condition called Epidermolysis Bullosa. Never heard of it? Neither had I, until my beautiful friend Jacqui Brown shared her story about her family's journey with this condition on social media.
We are still raising money for this cause and if you would like to donate please do so by clicking here.
When I learned about this condition, I knew I wanted to do something to raise awareness and funding into research. Jacqui was kind enough to sit down with me and answer some questions about her journey with EB, please have a read below.
1. What is Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (EB) is a rare skin disease where the skin blisters and peels at the slightest touch or friction. It is extremely painful it has been said that the blisters can cause the same about of pain as third degree burns. It is a result of a defect in the anchoring between the epidermis and dermis, resulting in water raising to the surface causing blisters. It is known as "the worst disease you have never heard of".
2. When did you find out/notice your sons had this condition?
We have two gorgeous boys Jayden (8) and Jentzen (6) We didn't know whether our boys would be born with EB, research says there is a 50% chance of the condition being passed on. My husband also has the condition, as does his brother, mother & grandmother and many other family members. At first when the boys were born we did not see any evidence of blisters to their skin, until a few hours later. I remember the first time I saw it was the first night, I was in hospital, and as I was changing Jaydens nappy/diaper I noticed them all on his bottom, not long after several started appearing especially in high friction areas on his hands, feet & face. This was a very similar story with Jentzen appearing a few hours after birth.
3. Does the condition become worse/better in certain conditions? (i.e. weather, certain surfaces, fabrics etc.)
The boys skin is effected by many different things. Most definitely the boys skin worsens in the warmer months because of sweat and friction, therefore we try and keep them as cool as possible in the warmer months. We keep them in soft fabrics such as cotton. We don't put them in jeans or hard or itchy materials. They can not wear thongs or leather hard shoes so we find the best shoes for them are sneakers we find for them the best are Nike Free Runs. Some days their feet can be so badly blistered they find it difficult to wear shoes or even walk.
4. Can your sons continue to do typical children activities like sports with the condition?
We try to keep their lives as normal as possible, we want them to experience all the same things that children experience growing up. As the boys are growing they are quickly understanding that having EB does effect them differently to other kids of their age. They both go to school, however they can miss many days because they have blisters and are in pain, often blisters can cause infection giving them high fevers, making them feel tired and unwell. My eldest son Jayden loves soccer. He has had a soccer ball at his feet since he could walk. He does play soccer, often many people are unaware that he plays while his feet are all bandaged covered in blisters. There has been times he has played and given his best and then he goes home and has to rest for the remainder of the day soaking his feet. At this stage Jentzen has been unable to play a sport at this stage, but it doesn't stop him from having fun!
5. How do you manage EB with your sons on a day to day basis?
We look after the boys skin each morning and night. The blisters can appear very fast. They may not be there in the morning and begin to get bigger throughout the day. It is best to drain the blisters as soon as they appear. This is so they don't get bigger. We have to do this by draining them with a needle. Some blisters are more painful than others as some of them are different, from water ones, under the skin, infected blisters and blood blisters. It is a very painful process for the boys. Once they are drained we put cream on them and then bandage them to protect them. They also need to have baths with antiseptic, salt and dettol.
6. How many people in Australia are affected by EB?
It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide
7. Is there a cure?
No there is currently no cure for EB.
8. How can we help or get involved with finding a cure?
There are two ways you can help.
1. DEBRA Australia: There is a volunteer based organisation funded by donations and grants called DEBRA. They help improve the lives of children and adults living with EB, a debilitating and sometimes fatal condition, by providing necessary support services, home aids and information to individuals and their families. DEBRA’s programs support and educate families living with EB, health professionals, communities and the general public. For further information please see debra.org.au
2. Australasian Blistering Diseases Foundation: Professor Dédée Murrell and her team of researchers participate in numerous sponsored clinical trials in the treatment of blistering diseases trying to help find forms of prevention and cure. For further information please visit blisters.org.au
I wanted to share some of the images of her sons blisters - they may be too much for you to see but it's their reality and I couldn't share this story without showing you.
If you would like to donate, please do so by clicking here - it's a cause that is definitely worth supporting!