Karl’s Italian adventure: Embracing travel with EB

I’m Karl, and I live with EB Kindler. I want to share my experience to inspire others to take that dream holiday, enjoy a day trip with friends, or even explore more of their local area. My goal is to encourage anyone who feels nervous about travelling with EB — trust me, it’s worth it!

Preparing for any adventure starts with the essentials. When it came to medication, I relied on an organiser, which kept everything in order. If you’re travelling, I recommend bringing a copy of your prescription along with extra medication in case of delays. Also, a mini first-aid kit and don’t forget to pack plenty of white socks! They’re great for keeping your feet cool in the sun — I always avoid black socks for that reason.

Our journey began at 4 am with a 32-hour coach ride to Italy, full of necessary pit stops along the way. A neck pillow helped me through that ride! As we travelled through Italy, we visited stunning places like Foggia, Capri, Rome, Monte Cassino, and Pompeii. This trip was extra special because I’d always dreamed of seeing the Vatican, and my mum surprised me with this trip just three months before we left!

I can’t pick just one highlight, so I’ll share two. First, Monte Cassino was incredible — the history, the abbey — it’s something I’ll never forget, and I highly recommend a visit. My second favourite moment was the Vatican. We loved it so much that we went twice, which turned out to be a good thing because the first time, I almost got kicked out! I accidentally triggered my camera’s flash while taking photos, and security quickly reminded me that flash photography was not allowed. Thankfully, it all ended well, but a tip for fellow travellers: always check those flash settings!

We also visited the Colosseum, and I couldn’t help but joke about when it would finally be finished — I’m sure the guide has heard that one before! Seeing the Pope in Rome was another unforgettable moment.

We planned our trip for a cooler month, which made it easier to enjoy our walking tour in Rome. Of course, I still applied sunscreen and covered up when needed — even on cloudy days, it’s easy to get sunburned. As we approached the Spanish Steps, my mum and I shared a look that said it all — climbing those steps wasn’t on the cards for us! But it didn’t lessen the experience at all. For anyone who might need a walking aid or wheelchair, my advice is simple: bring it! It’s always better to be prepared than to wish you had it. It’s also a good idea to notify the travel agent if you’re bringing a walking aid.

Looking ahead, I’m already excited for my next trip to Europe next year. I can’t wait to discover new places and make more memories. I wouldn’t change a thing about my last trip, and I firmly believe in living life to the fullest. If I could offer one top tip, it’s to get good travel insurance — it’s essential. Do your research and don’t settle on the first provider. If your type of EB isn’t listed, reach out to the insurer directly or ask your nurse what category applies. And always get written confirmation that your type of EB is covered.

To anyone with EB who feels anxious about travelling, I say: go for it! Invest in solid insurance, make sure they understand your needs, plan wisely, and most importantly, enjoy every moment.

P.S. Always learn a little of the language — it makes a difference! You could get a phrase book too. Even a basic one will help you learn some of the language, and second hand book shops often have these.

Arrivederci!

Karl’s top travel tips for people with EB

• Be prepared. Use an organiser for any medication you bring to keep everything in order.
• Try planning your trip for a cooler month at your destination.
• Do your research and get good travel insurance. If your type of EB isn’t listed, you can reach out to the insurer directly or ask your nurse what category applies. Always get written confirmation that your type of EB is covered.

Extra things to pack:

• A copy of your prescription and extra medication in case there are any delays.
• A mini first aid kit.
• Lots of white socks! They’re good for keeping your feet cooler in the heat.
• A walking aid or wheelchair in case you might need it. If you do bring one, it’s good to notify your travel agent of this as well.