We are still in May
And that means
We are still in TUBEROUS SCLEROSIS AWARENESS MONTH!!
I asked my internet friend and mother of Connor– an adorable, sweet boy who also has TSC – to tell HER story.
Here she tells us about the diagnosis, and her journey…..
I worried about so many things when I was pregnant. I researched the best prenatal vitamins (didn’t find much conclusive). I decided I would not have the occasional glass of wine until I was out of the first trimester, which turned into the second trimester, which turned into after birth. At most I had a sip or two at a wedding and indulged in an O’Douls. My doctor talked me into a flu shot, and then I spent the next two nights worrying that we’d be the victims of some undiscovered side effect. I lost sleep the night I ate some cheese off the naughty list. Hours were spent choosing the perfect pregnancy workout DVD that I only used once because I was too damn tired.
I changed the channel when Autism Speaks commercials came on. I couldn’t stand to hear the statistic at the end. We even had genetic testing done to rule out some of the more common genetic disorders. But everything rolled along fine; I didn’t even have morning sickness. Piece of cake…until week 30.
There was something strange about the heart at this visit. Words like calcium deposit, irregularity of the heart wall and the weirdest one–rhabdomyoma, were mentioned. Nothing was conclusive. But a heart defect? I hadn’t really thought about that, which is weird considering my husband had a brother who passed away in infancy due to one. I remember picking up a pamphlet and being shocked to read that the rate of cardiac defects is 1 in 100 births. Subsequent checks revealed it wasn’t growing or interfering with the heart, so by the time Connor was born, we had dismissed it as a harmless anomaly.
I worried about so many things I’d heard of–I never thought to worry about the things I hadn’t.
Tuberous sclerosis complex. Or “tubular-what?” as we knew it in the beginning. Within hours of birth Connor began to have seizures, and that, coupled with the “irregularity” in his heart, led quickly to diagnosis.
We had actually dismissed TSC weeks earlier after a Google search revealed how rare it is (estimated 1 in 6,000 live births). That kind of thing didn’t happen to US.
Now we were being told that it was indeed this rare genetic disorder and Connor might be facing brain surgery in the first few weeks of his life. Who do you talk to when it’s something nobody has ever even heard of? I’ve never been much of a math person, but I figured if it was estimated that 1-2 million people were living with it worldwide (which is a mere fraction of the population of Atlanta, and an even tinier number in the context of, say, the Chinese population) we were maybe the only people in Georgia. Definitely the only people in the Atlanta area.
Crazily enough, a Google search located another family in the area that had faced brain surgery at three weeks of age. I couldn’t believe that the one other person in Georgia that had it was so close. I contacted Wendi, who was the local chair of the TS Alliance, to get the details on her son’s surgery. At the same time I was registering shock that there even was a local alliance chapter at all. I had been shocked to find the national one. Then we found out there was a Step Forward to Cure TSC event scheduled a mere couple miles from my parents’ home. More and more people were appearing on the grid. The world was getting smaller. I didn’t understand how these people were living in such close proximity, and I had no idea.
Then came the Internet. I eased myself in slowly, “stalking” people with TSC that were doing well and living fairly normal lives. I had a love/hate relationship with Facebook as it was starting to give me answers, but how I hated my friends that posted pictures of their perfectly healthy children. It took time to join discussion groups where I also saw the more extreme end of the disorder. Not surprising considering I had buried the book of TSC stories we were given in the NICU in a drawer, not to see the light of day for several months. But once I was in, I was in. I found more peace, both from interacting with adults with TSC and from seeing the pure love from parents of more severely afflicted individuals. Gradually, my pain at seeing my friends take home their babies three days after birth subsided.
I started my blog in hopes of being part of the movement to get the word out. Let’s face it, people are more inclined to donate to and support research of things they’ve heard of. It’s frustrating to know that TSC is more common than Lou Gehrig’s disease and cystic fibrosis, yet I ask you, which of the three had you heard of before?
For the past month, I’ve hosted guest bloggers sharing their TSC stories in hopes that it will spread the word and help someone, perhaps the people who came to my blog by Googling “my child was born normal now we are told he has ts complex” or “my baby is diagnosed with rhabdomyoma now what.” The Internet saved me from drowning in bitterness and anger. I no longer feel targeted by God (even if I do have some residual anger) or punished for some unknown offense I committed. I wouldn’t exactly call it “misery loves company,” because I’m not miserable, but it’s so amazing to not feel alone. On May 1, the first day of Tuberous Sclerosis Awareness Month, my newsfeed was flooded with everyone sharing the accomplishments of their family members with TSC. It almost felt like a holiday, albeit one I’d gladly give up in exchange for a cure. I’m now friends with so many people in the TSC community that my perception is almost skewed to the other side. How do people NOT know about this condition? It’s everywhere!
I don’t know how people coped with rare diseases and disorders before the Internet. It horrifies me to think that it wasn’t that long ago that people believed they were alone. And there are still people out there that think that. I just recently met an adult with TSC who thought she was the only one until just recently. She’s 29 and just now getting connected.
So thank you to all my guest bloggers and all who share their stories in our groups. I now have friends, like Tina here, that I’ve never actually met. You, and a supportive family, are a large part of the reason that I can tackle this every day.