There are conditions and diseases in the world that many doctors have never even heard of. How is it that people are supposed to seek help when no one can help them? Those who suffer from conditions, such as the auto-immune disease referred to as Hidradenitis Suppurativa (H.S.), are left with no answers when doctors turn them away.
Many with symptoms of H. S. are unable to be professionally diagnosed due to the lack of knowledge about it in the general medical community.
Because of its rarity, not a lot is known about it, said Dr. Amir Tahernia, M. D.
“It is not well-known in the general medical community. Therefore, many with H.S. are frustrated by not having access to proper treatment,” Tahernia said.
Tahernia is a professional in the field of plastic and reconstructive surgery and has extensive experience in dealing with patience with H.S.
Few things are known about it, for example: it affects primarily females over males, it can be more significant with more weight, it often shows up in early stages of life, and it is a reaction in the sweat glands triggered by something entering the body. Even though it is not a well-known condition, medical sources estimate it affects roughly 1-4 percent of the global population.
The primary understanding of it is that it is an unhealthy, painful reaction that causes distress to the skin of the person.
H.S. is a reaction that can be triggered by many things—for some people, such as Lasell College student Amanda Mitchell, it is triggered by most nightshade vegetables: tomatoes, potatoes, eggplants and bell peppers.
Mitchell spent over a year living with this condition, being told by various doctors that it was, perhaps, her weight, her diet, or puberty. The unfortunate fact of the matter is that they had no idea what they were seeing and refused to admit that, ultimately leading her to doing the research on her own.
Within a few days, she found out the scientific name for her condition as well as the causes of it.
The reaction, when triggered, is similar to an allergy—it’s not fatal but is should not be ignored as it can cause irritation of the skin and semi-to-permanent scarring.
“Like all autoimmune diseases, your body just thinks that there’s something wrong. But in this case, it’s with your skin, so you get cysts because your antibodies are kind of going crazy,” Mitchell said.
The reaction is an inflammatory response to something that has entered the body. Mitchell, for example, experiences the reaction just 24 hours after eating any of the mentioned foods. Unfortunately, after consumption, there is no way to undo the reaction, leaving her to let it run its course. The condition of the affected areas of skin, she admits, are unhealthy and have made her feel unattractive because of it.
Although uncommon, H.S. can be found in many people, likely because they don’t know what it is, and no one will tell them. Local dining employee, Jess Morresacca, also admits to having a similar case.
“I found out on Google that it was H.S. So, I just stopped eating the foods on the list and it seemed to help. It’s just like—how did I find that out so easily when doctors couldn’t?”
It can be noted that there is plenty of information at the hands of the consumer to find out, yet professionals and experts struggle to find solutions.
Those who are affected, like Mitchell and Morresacca, have to live their lives similar to those with allergies. They find that they constantly have to check food labels, ask food preparers for ingredient lists, and oftentimes miss out on meals because there’s nothing available for them to eat.
“It’s not a main allergy—like peanuts—so no one really cares about it. So, when I say I can’t eat tomatoes, everyone’s like, what?” Morresacca said. She also made the point that it is not as black and white as not eating the vegetables—potato starch and tomato extract are commonly used as preservatives in many foods, which trigger the reaction as well.
Because it is hard to avoid, H.S. has a significant impact on the life of those who suffer from it.
Advice given from both interviewees reads a similar message: do not take “no” as an answer from a professional—if there is something wrong, seek help.