Kinspiration: Nikki and TSC-LAM
Diagnosed with genetic disorder TSC as a child and lung disease in her 20s, Nikki Seefeldt turned to smartphone-connected devices like Kinsa to more easily monitor her own health. Now facing a lung transplant, Nikki focuses on personal data tracking to take her prognosis into her own hands.
Twelve years ago, at the age of 26, Nikki Seefeldt was diagnosed with Lymphangioleiomyomatosis (LAM), a lung disease that results in symptoms like shortness of breath, collapsed lungs and chest pain. This stems from a pre-existing genetic disorder she’d suffered from childhood, Tuberous Sclerosis Complex (TSC).
“TSC means the body can’t differentiate good cells from bad,” Nikki said. As a result, she suffered seizures from infancy until the age of 3, and now has benign tumors all over her body. Though technically categorized as a pediatric disorder, TSC is not something patients grow out of.
“Those children become affected adults and often face many other issues stemming from the illness, like LAM. Unfortunately a lot of the support groups are geared toward children, so there isn’t a lot of help for adults.”
Through a group called TS Alliance, Nikki has been volunteering to help adults who suffer from the disorder. According to Nikki, “the organization is on the forefront of increasing education and resources for affected adults.”
She’s found that keeping herself educated on her disease has helped keep her calm and allowed her to take more control over her progression.
“What helped me the most was staying on top of research about my disease. It helped me lessen the shock.
I noted people’s experiences and saw their progress. Things would definitely have been scarier if I didn’t take this approach.” Now, Nikki is her own advocate, able to make informed decisions about her next steps.
Nikki's also started tracking her own health data as part of this approach . “I started looking into some connected devices when I came across an oximeter that plugged into my phone. I realized how much data I had to track and how useful this could be both for me and for my doctors.”
Nikki came across Kinsa when the batteries in her old digital thermometer died, and immediately the connected element caught her attention.
“I saw that Kinsa could be used to track my history on my phone. The app is really helpful, and I always have my phone on hand.” Following surgery, she’ll need to monitor any changes in her health carefully.
She stresses specifically the importance of temperature readings. “Once I get a transplant I'll need to check my temperature daily to make sure I’m stable. This is one of the benchmarks used to monitor whether my body is rejecting the lung.”
“I honestly learned so much about my habits and health through using things like Jawbone and Kinsa.
I would never have had a log of my data if I had to operate the old-fashioned way. Now I can keep a food diary, look at weight management - this is all easier with the apps. There is really so much data to leverage; we’re now able to have much more educated conversations about our own health and what next steps should be.”
Nikki's advice for those in her shoes?
“Don’t be afraid to ask for help. There are people that can offer support, but you need to ask.
Take control of your own health and recovery. Patients have to take on more responsibility now than they did before. You need to advocate for yourself. Do research, learn as much as you can. It will make things easier for you to negotiate.”
Today, Nikki works with fellow LAM and TSC patients while supporting research efforts. “I strongly feel that having someone who has the illness and can say, ‘this is how it affects my everyday life,’ sit in front of researchers and talk to them is very powerful and effective.”