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Left Leg First with Julian Del Balso

October 18, 2018

 

To paint a picture of who Julian Del Balso is, here are some of  the things his closest friends had to say:

 

“Julian Del Balso is the man. Nothing isn’t a party to him!”

- Anthony Nowicki

 

“Julian is the Cosmo Kramer of friendships. When he shows up, you know some shenanigans are about to go down.”  

- Nick Bondi

 

“Peed in my mom's bushes then says, “it is what it is.”

- Jonathan Fleming

 

“Amicable but dangerous. Voted most likely to transform into a wheelbarrow in high school.”

- Alfie Harrison

 

"The first time I met Julian, he told me his name was spelt "Juulian." I found this unique spelling both easily approachable and quite trendy. When I found out it wasn't true, he remained easily approachable and trendy, albeit for different reasons."

- Ian Reilly

 

"Julian is hands down the most real person I’ve ever met in my life. A lot of people today get caught up and worried about what other people think of them. That’s why it’s so nice to meet someone like Julian who makes every time I see him crazy entertaining with all his antics."

- Matthew MacDonald

 

“The best way to describe Julian is to compare him to T.J. from Recess. As a kindhearted and friendly dude, Julian is extremely easy to get along with. He sees things that others overlook and always has a bottle of Growers on him.”

- Sean MacDonald

 

 

 

Others may recognize him from his infamous 2017 presidential campaign for UBC’s Alma Mater Society, being an active member of his fraternity Kappa Sigma, and being an amazing guy all around.

 

But, there is another side to Del Balso that most people don’t get to see.

 

This interview shines a light on what its like being a patient with Epidermolysis Bullosa  and Lymphedema. Gaining insight on how day-to-day activities brings new barriers, holes in the healthcare system, and how his perspective on chronic pain has shifted through out the years. Everyone has a story in life and this is Julian’s.

 

 

Can you tell me a little bit about yourself?

Μy name is Julian Del Balso, I’m 22 years old. I go to UBC and I’m currently studying Psychology and Philosophy. I like hockey, video games, chilling with my friends, partying.

 

How long have you been a patient with chronic pain? 

I was born with Epidermolysis Bullosa. When I was 10, I got Lymphedema on my left leg because I had open wounds from the EB which got infected and the lymphedema has caused more health problems since then. Since I’ve gotten older, and grown taller, there’s more weight and pressure on my feet, causing more blistering. I have to be more selective of what I do now and do less.

 

Can you describe what your body feels like?

The blisters feel like a sharp pain all along my foot, especially when I walk. And when it’s really bad, they throb even if I’m not moving. My left leg always feels heavy, hot, and uncomfortable.

 

 

Can you run down a typical day for me? 

If I have blisters and it’s really bad, it’s hard to get out of bed and I do less. I put on my sock, I cut open my wounds when I have them or when I have time. If I don't have time I just deal with the pain of walking on them.

 

What are you doing to manage your pain ( e.g medications, treatments, therapies, etc.) ?

I wear compression socks everyday. I get Manual Lymphatic Drainage Massages… ideally every week. I have a pump (Compressible Limb Pump), but I don’t really use it. None of it helps with the pain when I have it though, the blisters just hurt until your feet go numb or they dry up.

 

What treatments is most effective?

None really. I guess the massages.

 

What, in your view, are the barriers to improving your pain management? 

Time and money. I don’t have a lot of time because I’m trying to do things like everyone else. A lot of the solutions are really expensive. Health care gives you a tiny bit of free stuff and everything else you’re on your own. They really don’t do much at all.  Insurance only covers like so much. The socks are like $300 each, they don’t really pay for any of them beyond the first two. And over the course of the year you probably get like maybe like 10 socks. The massages are expensive and it takes a lot of time. And if you’re doing well, you get a massage every week. In a perfect world, I would be getting lymphatic massages everyday.

 

How do you find distractions or your level of concentration while coping with chronic pain?

It’s really annoying to pull up my sock all the time like when I’m studying or if I’m out. If I'm seated in class, it's not really easy to pull it up and when it bunches around my leg there's not much I can do. Same with when I wear pants. 

 

Do you ever feel stigmatized?

It’s hard to tell your friends when you can’t do things.  People I’ve even known for a while still don’t know what I have. It’s not like I wear the sock as a fashion statement, but people sometimes judge you for having the sock and they don’t know why you wear it. If my friends like ask to go on a hike I’d just avoid doing it but it still hurts having to take myself out of situations.

 

 

How has your diseases impacted your psychological health? Social life? Work life? Financially?

Stress is a lot worse. Just wishing to be healthy and it’s really tough that you can’t fix it and you can only manage it. It’s a really tough outcome to accept.

 

When people see you and they don’t quite get it, like wearing the sock and you have to skip out on doing things with your friends and you have to make sure you can do everything before you go out and actually do it.

 

There’s a lot of jobs I can’t work because of it. Like, I can’t stand up for my job a lot, I can’t work anywhere too hot where I’m walking, nothing too active or outside. I need lots of rest.

 

Just spending money on things I don’t want to spend money on but you have to.

 

What have you learned about yourself as an individual that deals with pain on a daily basis?

I feel like it gives you a perspective that other people may not normally have. It really keeps you humble. It always makes you empathetic. 

 

Currently, there is no cure for Epidermolysis Bullosa and Lymphedema. Right now, only treatments and pain management tools are the main source of comfort for chronic pain patients like Julian Del Balso. Even though life has handed him with two chronic diseases, he still manages to make a positive impact around his community and in others lives by bringing his left leg first in every step of the way. 

 

If you want to learn more about Lymphedema and Epidermolysis Bullosa, visit these helpful resources:

 

BC Cancer - Lymphedema 

What is Epidermolysis Bullosa? - Medical News Today

 

If you wish to donate to research, education, and advocacy you can donate here:

 

Lymphatic Education & Research Network

EB Research Partnership

Special thanks to:

Julian Del Balso 

Anthony Nowicki

Nick Bondi

Jonathan Fleming

Alfie Harrison

Ian Reilly

Sean MacDonald

Matthew MacDonald

 

This article was inspired by Josh Baker, a fellow lymphedema patient, advocate, and story teller.

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