I grew up in a small town in the midwest with a rare genetic disorder. it started out with me having seizures as a baby. Luckily, they were under control quickly & I was successfully weaned off seizure medicines at 5. I graduated with a journalism degree & moved out East in 2000. Late 2001/Early 2002 I had a lung collapse, but didn’t know that’s what it was at the time. I felt off but thought I had pulled a muscle. It was here that a resident noticed my medical history and asked me if I had heard of my lung disease. At the time I hadn’t, but a year and half later, I would become very familiar with it as from 2004-2007 I had 5 lung collapses and 3 surgeries. From 2004-2010 my rare genetic disease decided to choose my kidneys to mess with & I developed benign but large tumors there that needed to be dealt with.
There are no cures for these diseases, but there is a treatment that helps both & helped me for a long time. Then in March 2015, I had more problems. By August at my transplant evaluation I had moved to needing oxygen full-time & not being able to work anymore. In October some one hit me as I was going over to exercise at my local community center, so that’s why I couldn’t list for transplant until March of 2016.
It’s been 6 months now, and I’m still waiting for lungs. I learn lessons on a daily basis of focusing on what I can do, not on what I lose. Some days, it’s easy to find focus, other days not so much.
I started a blog last August after my friends suggested it because I feel sometimes having that to focus on helps. I’ve learned so much from things I find in researching topics about lung transplant & transplants in general, but I also feel that if someone else out there going through something similar is helped by it, then even better.
I could have been here 5 years ago without my treatment. At the time I started my treatment it wasn’t even known if it would help or for how long. I had little left to lose, & went in with my eyes open & healthy degree of skepticism and even some doubt over whether it would work. Yet, the next 5 years I did respond & I was able to live outside my illnesses & learn new hobbies. That was a victory for me because for much of the years before all I had time for was hospital stays and doctor visits. It was nice to be able to explore other things & learn things – like storytelling & improv comedy.
For a good many years I volunteered for my diseases too offering support to people, but then also became involved in the research end, evaluating proposals.
That was fulfilling to keep momentum steered to more potential treatment options for people who need them.
Both of my diseases are fairly invisible to a point. But people often equate the word “benign” with simple or something that doesn’t cause problems. Both of my diseases are complex & no two people who have either one are affected the same way. Therefore, it’s important for us to be our own advocates when we need to be because what might work for me, might not work for someone else.
Also even though I was born with TSC, it remains with me through life. Genetic disorders may first be often noticed or diagnosed in childhood, but they are with a person for life. It’s not something that’s outgrown.
My diseases are Tuberous Sclerosis Complex (TSC) – a genetic disorder that causes benign tumors in various places & organs in the body, like the brain, lungs, & kidneys. Because of my TSC, I went on to develop Lymphangioleiomyomatosis (LAM) – this causes cysts to grow in my lungs & overtake my healthy lung tissue, basically poking holes in my lungs. Some women who don’t have TSC can get a sporadic form of LAM. This is often misdiagnosed as asthma, emphysema or other lung problems.
More info on LAM can be found here: https://www.thelamfoundation.org/
More info on TSC can be found here: http://tsalliance.org/
My blog: https://ilivebreathe.com/about-me/
I butt in:what is TSC?
According to the mayo clinic
Tuberous sclerosis (TWO-bur-uhs skluh-ROH-sis), also called tuberous sclerosis complex, is a rare genetic disease that causes noncancerous (benign) tumors to grow in many parts of the body. The signs and symptoms of tuberous sclerosis vary widely, depending on where the tumors develop and how severely a person is affected.
here are more resources for TSC:
I have to say how incredibly immpressed I am with nikki seefeldt,who wrote this story. I think it is amazing that she manages to be happy and positive despite having holes in her lungs! You truly are a inspiration to us all that even with chronic illness,you can be happy and give back. Thanks for sharing!☺
If you have a chronic illness, you deserve better. Share your story.spread awareness.help others understand what you are going thorough.
To see a whole bunch of reasons you need to share or to submit your story, just click me.
- Did you ever hear of TSC before this article? (I know I didn’t )
- Random question:I love emojis but I tend to keep them out of articles because I think they look unprofessional.what do you think?would u mind seeing them in posts?
- Do you have TSC or know anyone with it?
- Do you think its encouraging or depressing to read other peoples story of coping with chronic illness?