By Heather Lowe

Hi, I’m Heather, I’m 32 years old and this year in February I married the love of my life, Ash. I have epidermolysis bullosa simplex (EBS) so planning the wedding has been interesting. We chose February because it should have been cold (why it was 17C I do not know, it’s not what I ordered!) and because at the end of winter, my feet were in the best condition they were going to be for the foreseeable future.

We got engaged in April of 2023 in the middle of the North Sea on a cruise to Norway with our parents. I instantly started planning the wedding as the engagement wasn’t a surprise, Ash had had a few too many ciders and had asked our niece and nephew for their permission in the October before. One thing he thought about when choosing my ring, was both style and comfort. He went for something pretty and sparkly but smooth so it wouldn’t rub my fingers to minimise the risk of blistering to my hands. We did the same when choosing wedding bands, so that I could comfortably wear my rings, and I’m pleased to say my skin is taking to them really well.

One thing I had been conscious of after talking to another member with EBS, was getting my dress right. Corsets rubbed badly, and I was incredibly careful with lace. You can see in the photos there are silk panels that protected my arms from being scratched. I chose a style that wasn’t too heavy, and the weight all sat on my hips where I used a natural body powder and had ‘chub rub’ shorts on to protect my waist and legs from the dress and each other.

As we set up for the wedding, my family and friends were busy keeping me sat down for as much of the time as possible. They allowed me to walk around the venue once per hour, and the rest of the time I had to sit on a chair on the stage. When I was trying to get too involved in helping, they bungee corded my ankles and torso to the chair so I couldn’t go anywhere so I was as protected as possible!

This all enabled me to be able to walk down the aisle in my custom-painted, by my Godfather, light-up trainers, because who said fun shoes aren’t for adults too! The ceremony was balanced so I didn’t spend too long standing up or moving, and breaks were planned in where needed.

I also had six pairs of almost identical blue bamboo sports socks at the venue to be able to change into when needed. These are something I normally wear daily. I also had two backup pairs of shoes on the go so I could keep my feet cool. My bridesmaids did a fantastic job of supplying ice cubes to cool my feet down between dances. They then bagged up my socks and put them in the ice to get them cold, and I’m fairly sure they also filled plastic bags with ice and put them in my shoes to keep me going.

I survived with minimal blistering by doing all the above, and there is an excellent photo of me sitting on the floor with my ice bucket! This was great news as we promptly went to our friend’s farm in Yorkshire so I could kidnap their quad bike and look after the animals.

Living with EB isn’t easy, additional planning goes into everything including daily activities, and of course, life events such as a wedding or a holiday, something which others would take for granted.

 

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We are grateful for Heather for sharing her EB story and would like to congratulate her on her marriage to Ash.

Sharing stories is critical to our work, they can raise awareness of EB and DEBRA UK with the public and inspire donations that we need to run our services and fund vital research. They also allow us to share experiences, triumphs, and challenges within the EB community, to help others live better with EB.

If you would like to share your story, please do get in touch or fill in this form.