Epidermolysis Bullosa patient tries cannabis for treatment and experiences 'the greatest moment'

Photo Courtesy of https://pharmaceutical-journal.com/

Epidermolysis bullosa skin blisters on adult hands

For most babies, a birthmark on their thumb is not uncommon but for *Chris*, of Indiana, this mark was just the beginning of a painful, life- long condition. A week after he was born, Chris was diagnosed with Epidermolysis Bullosa (EB), a rare, genetic mutation where the body does not produce the protein that holds the top two layers of a person’s skin together.

“Immediately after I was born things started to get bad with my skin and they took me away to the ICU,” he said.

After days of testing, doctors found that Chris’s condition was due to a mutation in his DNA, rather than the disease being passed down by his parents.

“There’s no genetic history as far back as we can tell and there were no signs of it before birth. It was most likely just a random mutation that happened,” he said.

Chris also said when he was born, EB occurred in 1 in 50,000 births. Because of this, local doctors did not know much about his condition. So much so that doctors told his parents to expect the worst.

“Once the doctors confirmed it they basically told my parents to take me home and make me comfortable and see what happens. They didn’t really know what to do because they had no experience with it. The doctors there didn’t expect me to make it any more than a year.”

Like any parents, Chris’s mother and father were scared but refused give up on their son. Fortunately, after doing research of their own, they found that the type of EB he had was not

going to kill him but it would progress slowly throughout his life so they immediately started looking for doctors who specialized in EB. However, in Chris’s early years, finding an EB specialist near his hometown was easier said than done.

“We were able to find one doctor who was treating another patient with EB so I saw him for a few years when I was really small even though he didn’t specialize in it. I saw him because we couldn’t find one,” he said.

By the time Chris was 5-years-old, his condition had become worse. At this point he was unable to swallow his own saliva due to blisters that had formed in his throat. The doctor that Chris was seeing at the time told his parents that he would need to have surgery on his throat to remove the blisters but given Chris’s age, his parents were having a difficult time finding a doctor that was willing to do the surgery. After a year of searching, they finally found a doctor who agreed and also gave his family some much needed resources.

“This led them to find a clinic that specialized in EB. The first two times I was there I had the surgery and I have been going there ever since,” Chris said.

He added that he has been going to the same clinic yearly since he was 10-years-old and sees eight to 10 different specialists each time including dermatologists, physical therapists and nutritionists, just to name a few.

“They all work in different types of medical fields but they also specialize in my specific illness,” he said.

Now 26, Chris has experienced atrophic scarring and blisters forming on his body, has developed painful and itchy skin, is extremely sensitive to temperatures and is at high risk of infection among a slew of other things.

“It really affects me all-around, just in different ways. I have limited mobility; my skin is very fragile which causes it to tear and blister really easily. Obviously, it’s painful if your skin is tearing open. It can also be very tiring if your body is constantly trying to heal,” he said.

“I have trouble sleeping because of the pain and I can’t be outside for a long period of time if it’s over 80 degrees. It has also affected my mental health because of the way I’ve been treated over the years and I’m beginning to realize that my voice is slowly starting to go away.”

After doing his own research, Chris tried cannabis for the first time in 2015 but did not experience any of the expected side effects. Two years later he tried it again and found incredible results.

“It was one of the greatest moments because I didn’t have any pain for the first time that I could remember in a long time. Ever since then I haven’t stopped for more than a month at a time,” he said.

One would think that doctors would suggest cannabis as a treatment given that it is known to treat symptoms of EB such as pain, insomnia and limited flexibility but Chris said that has not been the case.

“They’ve never recommended anything cannabis related to me at all. I don’t think they’re allowed to because of hospital policies. Now that legalization has started to spread a little bit more and that the hospital I go to is in a state that is now legal, I think that may change but I still don’t get much support from doctors.”

Chris added that he smokes about a half a gram per day to help with his EB symptoms. He has also tried CBD oil but unfortunately it has not helped him. Although this could be because the oil he has tried was derived from hemp, not the actual cannabis flower itself, which is known to have a stronger effect on most people.

“I wanted to start at the bottom and work my way up. I just haven’t found the strength that works for me yet, but I am definitely willing to try [the oil] again. If I could get a higher strength oil or topical that would be great but because I’m in an illegal state, it’s very difficult to get. I use flower the most because it’s what I can get the most of that actually helps,” he said.

EB symptoms aside, Chris also decided to try cannabis to manage his depression and anxiety which became an issue while he was in college. By this time the EB was also interfering with his everyday life to the point where he decided to leave school all together.

“It [EB] was the main cause of me dropping out but I had also started to develop anxiety and depression really bad, which I had never dealt with before so I wasn’t prepared to deal with that at all,” he said. “I would skip classes because of the anxiety and depression or I would skip classes simply because I was in so much pain. Between all of these things, I just couldn’t keep up.”

Once he left school Chris found a job at a local news station but had to stop after a year because his health continued to decline. Since then, taking a job with set hours has been out of the question so for now he is trying to heal and figure out what to do going forward. Currently, he is trying to start up his own photography and drone video business.

“My disability is not like a lot of others, it varies from day to day. Today I may be able to run a mile and tomorrow I may not be able to get out of bed,” he said.

“It really depends on how my body is feeling that day so it’s hard for me to take a job with set hours because I’m not able to say hey I’m hurting, I can’t come in today. I’ve really come around to the idea that running a small business or being a part of a small business will be best for me because it will allow me to have flexibility with my hours.”

In addition to using cannabis, Chris also has his service dog, Sam, to help him with daily activities.

“It’s really hard for me to get up because of my strength and mobility. So, if I go to the store and bend down to get something from a bottom shelf, it’s hard for me to get back up so I use him as a brace. He also senses anxiety attacks which is very helpful for me because it lets me know when an anxiety attack is about to come on before it really gets amped up,” Chris said.

In regards to advocacy, Chris said he would like to talk to Indiana politicians about marijuana legalization and would tell them how it has helped himself and others. He also stressed how important individual advocacy is within the cannabis community.

“I would tell anyone who hasn’t tried cannabis for one reason another, to just try it slowly because I think it will help take the stigma away from it. That has really helped me and getting the people around me to become accepting of it and become advocates for it,” he said.

“Anyone I know who smokes, uses oils or anything related to marijuana are seeing some kind of benefit from it. They aren’t sitting around getting high with their friends. It’s helped me and I’ve seen it help other people.”