Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants to work internationally.
She also lives with a condition called NOMID and was integral in getting Rare Disease Day recognized in the state of Nebraska by writing the governor when she was only 16!
She wasn’t diagnosed with her own rare disease until she was almost 13. In fact, for over a decade she lived with pain every day.
She bounced around from doctor to doctor for years without answers. She was born deaf in her right ear and with poor eyesight. She had had a rash on her torso since birth, and every night she went to sleep with several heating pads on each of her knees. Even so, she would wake up three to four times a night in tears from the pain.
She said she hadn’t known, as a child, that that wasn’t normal; that you were supposed to be able to sleep through the night. Her knees and legs hurt so badly she could sometimes barely walk and often had a limp. She even had school teachers ask her if her shoes might be too small.
She also had always been small for her age. At age 11 she was barely 4 feet tall and weighed only 48lbs. Doctors took X-Rays, MRIs and CAT scans; some thought maybe she had sickle cell anemia. It wasn’t until she saw a doctor at Shriner’s Children’s hospital that NOMID was brought up as a possibility. As the doctor listed its characteristic symptoms Janelle thought “they all fit”. She was scheduled for a bone biopsy, during which, it was discovered that the growth plate in her knee was decayed and required more extensive surgery.
A month later her NOMID diagnosis was confirmed and she began receiving daily shots of Kineret. She says that the first shot was the most painful, but that after that first dose the rash that she’d had her entire life finally disappeared. Her life is much improved with the medication. She states that the pain she endures during the administration of the drug is nothing compared to living without it. Since starting Kineret she’s grown a full foot and gained 50 pounds.
Finally receiving a diagnosis was a relief to her and her parents she says that
“It was nice to be able to know I can control it, but when you grow up with it you don’t understand that the way you feel isn’t the way that you’re supposed to feel. Like when they would ask you to describe your pain on a scale of 1-10, what is a 10? You’re always in pain anyway, it’s just there. Every day, every night, it never goes away.”
She feels that through all the doctors’ appointments and her diagnosis, her mother was very supportive and pushed her to advocate for herself. Her mother encouraged her to be the “loudest voice in the room” at appointments, which can sometimes to be hard for children. She still hasn’t met anyone else who has NOMID but her mother helped her recognize that she wasn’t alone in her diagnosis.
In this way she pushed for rare disease day to be recognized. She’s all too aware how few people know about it. She now has her speech for explaining it down pat. She says,
“I can go into any doctor’s office and let them know about what I have and they’ll say ‘ok I’ll be right back’ and then a few minutes later they come back and say ‘So I googled your disease and its real’, because they had never heard about it before.”
As she applied to colleges she made sure to check how big the campuses were. Some she vetoed because she’d have to walk too far, and as she put it
“I’d always be late to class, my little legs just wouldn’t make it.”
Her advice for those going to college is to find a niche. She was never into sports but ended up rushing a sorority and found a community of close friends that way.
She says that once
“you find people you can trust, it [NOMID] will just fascinate them and they won’t care that you have to give yourself a shot every day or that you’re sick with a rare disease. They’ll find it fascinating to hear about. It’s not something that has to separate you from anyone else. When you find those people they won’t judge, because they’ll understand. They can’t truly know what it’s like to live with it or know your whole story the way you’ve experienced it, but they can be understanding.”
“I know a lot of people look at me differently after they know about NOMID than when they first meet me, so I try not to judge people. I understand that a lot of people are struggling with something that you wouldn’t know that they are because if you can hide things, you do.”
“To people who have just gotten a NOMID diagnosis I would say don’t be afraid, don’t hide it and try to embrace it. You don’t even know how many people could also be suffering like you are. Getting a diagnosis can be the best part of your life because it will change your life; you’ll be able to understand what you’ve been going through and you’ll be able to explain it to people and people will be understanding.”
“I would love to meet somebody else with the same disease as mine and let them know they’ll just be fine.”
To contact Janelle, email her at firstname.lastname@example.org
All images sourced from Janelle