When Kayla Riddle-Presjak decided go public about her health problems, she didn't mess around.
She went straight to Hollywood. Or at least Huntington Beach, Calif.
Kayla Riddle-Presjak is shown in her Warren home. Presjak has hidradenitis suppurativa, which is characterized by small or large, tender, red nodules beneath the surface of the skin. To raise awareness about the little-known disease, Presjak enlisted the help of TruTV’s “Operation Repo” star Lyndah Pizarro.
Presjak has hidradenitis suppurativa, which is characterized by small or large, tender, red nodules beneath the surface of the skin. The areas most often affected are the underarm, groin and perirectal skin. Other regions may also be affected, such as under the breast.
"It's an embarrassing disease, so people tend to stay in the dark about it," Presjak said recently in her Warren home.
The 22-year-old is a fan of the reality show "Operation Repo" on TruTV. Lyndah Pizarro of Huntington Beach, along with her dad, Lou, and sister, Sonia, is part of a team that picks up repossessed vehicles.
The Faces of Hidradenitis Suppurativa, open to the public for information and awareness and was created by Teri Korri of Timmins, Ontario, Canada
Hidradenitis Suppurativa Institute in Westlake, founded this year
Video made by Lyndah Pizarro of TruTV's "Operation Repo"
Presjak contacted Pizarro, who offered to do a Ustream online video to help raise awareness about HS.
"She's a celebrity who doesn't even have the disease," Presjak said. "What touches me the most is that it's at her house from her computer - in her home."
And when it comes to explaining HS to viewers - the video dedicated to Presjak has been viewed about 2,000 times - Pizarro doesn't mess around, either. With her pretty face and shiny pink lip gloss close to the camera, the "repo princess" doesn't talk about perirectal skin. She talks about your butt.
"I try to be as direct as possible, while being aware of others feelings at the same time," Pizarro said in an email to the Tribune Chronicle. "I'm not a fan of beating around the bush. I feel like it's a waste of time, and life is too short for that."
In the video, she says: "Try imagining not being able to sit on your butt. How are you going drive? How are you going to even sit in a car? How are you going to sit in a chair? How are going to sit down? How are you going to sit on your bed or get in your bed?
"Just small simple things like that is something that we all definitely take for granted."
Also mentioned are hugs - sometimes it hurts too much to get them.
Presjak said her journey with HS began when she was a seventh grader at Maplewood Schools with what the doctor thought was a boil or a pilodonal cyst, which occurs at the bottom of the tailbone and can become infected and filled with pus.
"The pain was excruciating. I was bedridden," she said. "I had to crawl to take a shower, to get out of bed."
Although it was embarrassing to show the doctor, she did. And from there came a long line of creams and other prescriptions. She was told it was boils or dermatitis, that it might be because she was overweight or wasn't clean.
HS lesions can ran the gamut in size and severity. They can be as small as a pea or as large as a softball. They form, grow and then drain, which can have a foul odor. Presjak said hers are usually golf-ball sized.
"I have about 12 below the belt that never go down," she said. Hers do drain, but not completely, and although the drainage has a "weird, waxy texture," fortunately for her it does not smell.
Presjak said HS leaves a unique form of scarring - tunnels, or sinus tracts, may form around and between the lumps. And although there's no cure, the disease has been known since the 1800s.
Finally, this year, she was diagnosed.
"I got tired of not knowing what I have," she said. "I thought 'the answers are here somewhere. They have to be.'"
She found similar symptoms - thank goodness for Google - as well as online support groups with others willing to share their stories.
Presjak's doctor is Warren dermatologist Kyle Wagamon.
"It's more common than you think," Wagamon said. "It's in the groin and armpit areas, and breast, so people don't advertise that they have it."
Wagamon said HS is chronic and can take years, or even decades, to burn itself out. He said Presjak's condition is mild to moderate.
"I know she is highly concerned," he said. "She's a young girl. It does affect the social life."
Wagamon, who sees about two cases a week, said a lot of people do get by with this. And as far as working, it depends upon the job - horseback riding, for example, is not a good choice.
"It's like diabetes. It definitely affects your life, but it can be overcome," he said.
But when it comes to seeing the doctor, he says there's really no question.
"It's clear - there are these painful, cystic, acne-like lesions in their groin or armpit. They know there is something wrong," he said. "It's uncomfortable enough that they want to get help."
He said for some people, the disease is debilitating - HS sufferers sometimes have to have the lesions excised, choosing scarring over the painful lesions.
"It's an under-represented disease in society because of its location on the body," Wagamon said. "Because it doesn't get the same publicity - it comes with a certain degree of embarrassment."
He said for those who have HS, it's no fault of their own.
"You have to have the right genetics to get this disease," he said.
However, he recommends weight loss, especially since HS presents itself in areas where skin rubs together. He says he sees it less often in thin, healthy people.
In the online video, Pizarro, who also is 22, also shows pictures, and they are not for the faint of heart or weak of stomach.
"The reason I showed the pictures was because people sometimes don't really understand things unless you just put it in their face," she said. "I think that unless it is actually happening to them, they won't understand or empathize with others who are suffering.
"I can't imagine not being able to do certain things like wearing my favorite clothes or drive because you can't sit down because of the open sores."
Presjak said HS sufferers have many different variations of pain.
"Mine is constant - it feels like something is being shoved in my body," she said.
She said it's like a burning sensation, and she can feel when one is forming. However, Presjak is against surgeries.
"I think people just get them removed for cosmetic reasons," she said. "It relieves some discomfort, but it can come back there and leave huge scars."
She also avoids long-term antibiotics.
Presjak said in school, she always wore pants and could never go swimming. She might go through a whole box of Band-Aids in a day and would sometimes replace the box in the cabinet so no one knew.
"I wouldn't wish this on my worst enemy," she said. "It is debilitating in every way."
She said it hurts to wash there - like a "searing pain if you even touch them."
And she never told a soul.
"How can I tell you what I'm going through when I don't even know what I'm going through?" she said.
Pizarro addresses this in her video.
"I can understand why some people don't want to talk about it because they're embarassed," she says. "What do you do when the doctor can't help you? You feel so left alone and helpless."
Pizarro said she hopes the video is is a positive step, and she offers a favorite saying that may encourage others to speak up.
"Closed mouths don't get fed," she said. "Together we will find a cure for this, and we will raise awareness for this."
Presjak was inspired to come forward by others that have done so in their hometowns. One woman did a purple-ribbon campaign, tying them on trees.
Presjack takes precautions such as staying out of the heat, wearing cotton clothes and avoiding stress - that's a big one.
"I try staying positive and stress-free," she said.