Photo by Valerie Shelton – Tiffany Johnson explains what it’s like to have an invisible illness to students in her moms Building Bridges program at Cole Elementary School.
By Valerie Shelton, Editor
On the surface, Buchanan sophomore Tiffany Johnson, 15, looks like a normal teenage girl, but in reality, she struggles with two rare syndromes that few people can understand. She and mom Sherri Johnson, a teacher at Cole Elementary, call her syndromes “invisible illnesses.”
Johnson’s two debilitating conditions are Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome (POTS).
Ehlers Danlos is a genetic condition, which causes faulty collagen in every part of her body. Instead of holding her bones and joints in place, the collagen in Johnson’s body is more fluid, causing her to be extremely flexible and double-jointed but also making it easy for her to break or sprain her back, knees, elbows, wrists, ankles and other parts of her body. Johnson said she has sprained her ankles 10 to 12 times and her wrists several times. She can also easy dislocate her hip.
As a result of the Ehlers Danlos, she also suffers from POTS, which is the dysregulation of her autonomic nervous system. POTS causes her heart to race from time to time and can cause trouble breathing. Due to the POTS, she can’t participate in P.E. at school and needs to stay out of the heat, which often triggers a POTS crash. Johnson also needs to sit and stand up slowly because if she moves too quickly, she can become lightheaded and faint. She also needs to stay hydrated to avoid POTS crashes.
The two conditions are so rare her mom says doctors didn’t even recognize that Tiffany had a serious medical condition until she nearly drowned in 2009.
“We didn’t understand what was happening to her body because Ehlers Danlos Syndrome is a very rare disorder,” Sherri Johnson said. “We would go to the doctor and tell them what was happening and they would say, ‘oh she is just having growing pains’ or ‘maybe she is just clumsy.’ They didn’t know, they couldn’t figure it out. We kept trying to figure it out and eventually she was having some other symptoms. She started fainting a lot and I thought, maybe she is just tired and needs to take a nap, but one time she was swimming and that is when the faint happened. She had swallowed a lot of water and we had to pull her out and she was unconscious. Luckily a lot of teachers like myself take first aid in CPR so I knew how to give her rescue breathing and bring her back to life. Thank goodness I did, but she still had to go spend three days in the hospital. When that happened, I went back to the doctors and told them there was something going on and that we needed some answers so we could get her some help.”
Because of the rarity of her syndromes, Tiffany has to travel to Bakersfield to see a cardiologist for POTS and couldn’t be officially diagnosed with Ehlers Danlos until visiting a geneticist in Chicago.
Last month, Tiffany visited her mom’s Building Bridges class at Cole Elementary to talk to students about her invisible illnesses. Her goal in sharing her story is to spread awareness so kids, and adults, don’t judge others based on how they look.
Tiffany told students that she has been teased multiple times by people who don’t believe she really has an illness. Because she can break or sprain something at anytime, she will sometimes come to school in crutches, or even a wheelchair, and it will seem out of the blue to her classmates. Her physical limitations also mean she often takes the elevator at school and many can’t understand why she would need to do that.
“People have come up to me and have told me they think I’m faking, but this is the type of condition I have,” Tiffany said.
Tiffany told the kids it is important not to say something like that someone because you never know what condition they may have. While on Tiffany’s good days it may seem like nothing is wrong, something could happen in an instant. For example, she once sprained both her ankles after ice-skating.
“I went ice-skating and after I took both of the skates off, I got up and took a step and then when I took the second step I sprained both of my ankles,” Tiffany said. “Now I have to be very careful whenever I go ice-skating, because while I’m skating everything is fine because the skates hold my ankles tightly in place, but once they are off the collagen can get too loose.”
Tiffany also experienced frequent sprains to her wrists when she was in gymnastics as a child. Since she was so flexible, she was very good at gymnastics but she always had trouble doing back-hand springs because her wrists couldn’t hold her up and she would sprain them. It wasn’t until she was diagnosed with Ehlers Danlos that it all made sense why she struggled with that gymnastics move.
Clearly, Tiffany enjoys physical activity—ice-skating, gymnastics, swimming—but as she explained to the class, just because someone looks healthy and is active doesn’t mean they don’t have any conditions.
Now that she knows why she is so susceptible to breaks and sprains, Tiffany takes it easy. She walks on the treadmill at the gym with her mom’s supervision and doesn’t do P.E. or sports at school. She is also closely monitored when swimming. She even quit taking hip-hop dance lessons after school after giving it a try because it was too strenuous. She rarely wears heels and one day, when she gets her driver’s license odds are she won’t be able to drive without another adult in the vehicle in case she has a fainting spell.
Due to the POTS, Tiffany has also struggled academically in school. POTS causes brain fog so Tiffany has trouble concentrating and has a bad short term memory. She recently started taking a new medication that helps her focus better, but its still tough. Altogether, she takes seven medications each morning and four vitamins before bed. They do everything from helping her focus, to regulating her digestive system, which is adversely affected by Ehlers Danlos also, to just helping her collagen stay in place a little better.
Tiffany says it’s hard knowing that she has many limitations, but her hope is that her story will help more people understand Ehlers Danlos and POTS, as well as teach people that they need to treat everyone with respect, no matter how they look.
“I was really excited to come and explain it to the kids,” Tiffany said. “I like telling them about my conditions so that more people know about it. Not many people know what Ehlers Danlos or POTS is.”