To better understand how behavioral symptoms develop in children with NF1, Dr. Stephanie Morris is leading a clinical study to measure symptoms of attention deficit, autism, and other behavioral problems in preschool-age children with NF1 aged 2.5 to 6.5 years old. Participation in this study involves the completion of three parent-reported questionnaires (completed during the annual NF clinic appointment), a single blood draw for NF1 gene testing (if clinical genetic testing has not been previously performed), and the possibility of a formal Autism diagnostic assessment for children with significant autism symptoms. Modest monetary compensation will be provided to offset the time and effort required for study participation.
All clinical studies are actively enrolling, and participation is purely voluntary. If interested in participating, please let the NF team know during your next clinical appointment.
Nicole’s Nook: iPad Cases and Accessories
In this month’s blog, I thought it would be worthwhile to revisit the many iPad cases and accessories out there.
If you are looking for durability and protection, especially for those younger users or those who tend to be a little tougher on devices, some recommendations include:
This is especially helpful for those students using the SnapType Pro app to take a picture of their worksheets for school.
So protect and maximize that iPad and find the case and accessory that best suits your needs and use!
– Nicole Weckherlin, OTR/L, St. Louis Children’s Hospital Occupational Therapist – Team NF
Patient Spotlight: Alexandra Schroeder
My introduction to the world of Neurofibromatosis began when I was only three years old. It started with a bug bite on my neck and fevers. This was in 1998, and at that time, not a lot was known about NF. On a visit to our local pediatrician, he could not explain the fevers that I was experiencing at night. Also, on further examination while looking at my back, they noticed that it appeared to be curving to one side. After a CAT scan, he decided to send me to the “big guns” St. Louis Children’s Hospital. After a CAT scan and an MRI, the doctors discovered a tumor in my back. They then performed surgery to try to remove the tumor. At this point, I was diagnosed with Neuroblastoma—a childhood cancer with a survival rate of 50%. As a result of this diagnosis, I stayed on the oncology floor for five days. At this time in my early life, Batman was my hero, so I had a Batman doll at my side at all times, through the various tests and even surgeries.
After the fifth day, before I was to begin chemotherapy, a young doctor entered my hospital room with tears in her eyes, and told us that I did not have Neuroblastoma, but rather something called Neurofibromatosis Type 1 (NF1). Soon after this diagnosis and more tests, I was introduced to Dr. David Gutmann, who over the past eighteen years, has always been there for us whenever we had any questions or concerns regarding NF1.
I ended up developing severe scoliosis as a result of the neurofibroma in my back. It was necessary to have instrumentation, or rods, put into my spine, which was followed by six months of wearing a hot, plastic brace. The upside to that, was that my brace was decorated with kitties, which was very important to a three-year-old girl. That is what we did—making the most of each situation. Each new challenge always looked like a new adventure.
After all of that, I had one more challenge. More surgery faced me in the fall of my sixth grade year. The curvature of my spine had become more severe, so I went through six weeks of traction. I was in the good hands of a world-renowned orthopedic surgeon at St. Louis Children’s Hospital. My mother and I had a seven week stay in the hospital and to say the least, we made the most of it. To begin with, I had a halo put into place for traction, and it was decorated with the most beautiful rhinestones. My stay was during the month of October, so my hospital room was decorated for Halloween, which allowed us to go on many “journeys” throughout the hospital. The last night before my six-hour surgery just happened to be Halloween, and in the spirit of St. Louis Children’s Hospital, there was trick-or-treating and fun Halloween festivities to take our minds off where we were heading. Oh, and I dressed up as a leopard with great face paint. The next day began with a six-hour surgery, now the fun was over, but it was worth it, because the traction had made me straighter and a few inches taller.
Fast forward a few years. I have always had big dreams, so when I was in high school, I really wanted to attend the University of Illinois to study graphic design. Throughout high school, I was in love with biology, music, and the arts. Those were the classes that I exceled in, but I had always had problems with mathematics (I had found out later that could be caused by NF1), which sometimes did make high school a little difficult for me. I was always worried that I wasn’t good enough to get into so a prestigious school, but through hard work and dedication, I made it, and entered The University of Illinois as a freshman in the fall of 2014.
The University of Illinois has provided me with some of the best times of my life. I am taking design classes to prepare me for my future career, and have joined various clubs and a sorority on campus. In addition, I cheer for my school in sporting events until my voice gives out. I can’t begin to count the number of amazing people that I have met and I am continuing to meet.
Halfway through my college career, I became more curious about NF1 and what it could have in store for me. I remember one night after I researched it for hours, I learned so many things about the condition I have had my entire life. Why or how I would do things and why I looked the way I did, and also why I had gone through so many of those tribulations as a kid.
NF1 has made me a very strong person, and continually makes me stronger every day. I will never let it stop me from doing the things that I love. During my junior year, I decided to combine my interest in graphic design with a deep passion for medicine. I’m not sure if that stemmed from being in and out of the hospital as a kid or from reading countless National Geographic magazines. After researching potential career options in medicine and graphic design, I stumbled upon The Association of Medical Illustrators website. These are the people who design all of those colorful pictures in your biology or anatomy book. This is exactly what I want to do with my life.
In the summer of 2017, I was awarded an internship as a graphic designer at the Washington University Neurofibromatosis Center, where I have been creating medical illustrations. I am so appreciative for this opportunity. A big thank you to Dr. Gutmann and his staff. This internship has provided me with an amazing opportunity to have a taste of what my dream job would look like.
Written by Alexandra Schroeder
Please check out Alexandra’s wonderful illustrations as they are posted on the Gutmann Laboratory website this fall (gutmannlab.wustl.edu).
Patient Spotlight: Emily Medlock
Growing up with seven siblings, none of whom had NF1 was tough. You see, when I was an infant, I was diagnosed with NF1, a disease my mom knew nothing about. She learned quickly after our general doctor recommended us to Dr. Gutmann and Washington University who specializes in NF1.
You can imagine how frightened my mom and siblings were when they were initially told by our local physician what it was. That I would likely not be able to walk, that I would be blind, that I would be mentally handicapped, that I likely wouldn’t live to be an adolescent, and that the tumors I had may grow cancerous. This is devastating news to any parent. For me, as I grew older, I didn’t even think about these things. I somehow knew that none of these extreme effects would ever reach me. So, there were tumors wrapped around my organs and spine, big deal. I was naïve, yes, but had more faith than most – a faith that was necessary for me to live a semi-normal childhood with my amazing family and more than supportive mom.
As hard as my family tried to make my life normal; however, the outside world wouldn’t always allow that. I was stared at, alienated, and forced to define myself simply by my NF. It took years and years for me to get past this. As a child, I would spend hours on the internet, looking for hope. I would try to find someone that had become an adult, gotten married, was loved, and lived a normal life.
I knew that I wouldn’t have any serious problems, yet my mom still worried. We continued to make the five hour trek to see Dr. Gutmann at St. Louis Children’s Hospital a couple times a year. Still, I had one major difficulty: I had this tumor growing on my neck. I spent my teenage years trying to cover it up with clothing and my hair.
Little did I know that the straight A’s I got in school were significant. Little did I know that the fact that I loved English and Creative Writing would be so important. Little did I know that celebrating my 16th, 18th, and 21st birthdays were such amazing feats.
As I got older and wiser, I realized something else very important. My NF didn’t define me. I wasn’t my disease. I believe that this mindset all started when I wrote a book called Letting Go. It launched my career and helped me learn who I was. For the first time since I was a young child I felt that I opened up and didn’t hold back. I was me. It took writing to find out who I even was.
Since then, I’ve written Book Two, yet to be published. But these days, I have little time to write novels, as I work full-time as a freelance writer online. My site Emily Medlock was launched in 2017, where I am hirable for almost any writing need. I make a decent living writing today for gaming sites, YouTube channels, viral sites like TheRichest, and more.
I’ve also met a really awesome man who I will be marrying in 2018. He’s one of the best things that has ever happened to me. I found myself before finding him, but since finding him, I’ve learned even more about accepting myself than I thought possible. That’s one of the best things about a good relationship. You become more and more of yourself every day. You don’t change, you become better. The same could be said for a good career.
More than anything, as far as NF is concerned, I want to be a ray of hope for young people struggling to accept themselves. Young people who want to know that they can grow up to have a normal life full of love, prosperity, and success. And young people, you know what? Do not settle for anything! You’ll find a career where you flourish. You will find a man/woman that will treat you like a king/queen. There’s just one rule: be yourself and don’t be scared!
Bravelets™ on Sale Today Only!
Bravelets™ is having a one day sale today, April 2, 2014! Use the coupon code lightblue2014to receive 10% off a cuff bracelet.
With each item purchased, $10 is donated to the Washington University NF Center in support of the outstanding research and educational resources provided by the Washington University NF Center daily.
Thank you for your support and remember to be brave.