Spotlight Story Program: Rachel’s Story

Meet Rachel Necky

As a rockstar athlete, teen Rachel Necky was ruling her life as an ice hockey player, but one injury would change her life direction. Dealing with the neurovascular condition called CRPS, Complex Regional Pain Syndrome, Rachel had to dig deep, find even more strength, and use her dedicated athlete mentality to fight back against her condition and realize that she could push herself and conquer all.

My name is Rachel Necky and this is my story: When I was little, I always noticed that simple things such as someone poking my arm and tickling me caused me pain. I didn’t understand it and didn’t really think much into it. In 2012, I fractured my fibula playing kickball in gym class. I went to the first orthopedist I could get an appointment with. They initially gave me a walking boot.

Unfortunately, that didn’t help because it was pushing on a very sensitive spot on the side of my leg–I call it my soft spot.

So, the doctor decided to take it off before I was fully healed, and they didn’t have me go to physical therapy. Once the boot was off, I started having very extreme, intense pain on my soft spot. The pain progressed and bounced over to the same spot on my other leg and continued switching back and forth. I went to another orthopedist and they told me I had shin splints.

The pain began to spread until it covered every inch of my body.

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Spotlight Story Program: Erin’s Story

Meet Erin Raftery

Since before Erin Raftery could even talk, she was dealing with problems in her health. From a battle with leukemia to cardiac conditions, Erin has had to adapt her lifestyle to her health, and that made Erin a stronger and more accomplished young adult than her wildest dreams.

Yes, I spent a lot of my teenage years in outpatient care at pediatric hospitals.

When I was eighteen months old, I was diagnosed with leukemia and received chemotherapy until I was three years old. The chemotherapy caused me to have several after effects. The first was diagnosed while I was still receiving chemo, and that would be Cardiomyopathy.When I was ten years old, I was diagnosed with epilepsy. When I was a sophomore in high school, my heart condition worsened and turned into a condition called Dilated Restrictive Cardiomyopathy.  Also in high school, I was diagnosed with asthma. And lastly, when I was sixteen years old, I was diagnosed with primary ovarian failure.

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Spotlight Story Program: Emily’s Story

Meet Emily Levy

After years of mysterious illness symptoms and suffering, Emily Levy was finally given a diagnosis of neurological Lyme disease, but that did not stop Emily for achieving her dreams.  Now as a successful boss lady and creator of the company Mighty-Well, Emily has decided to take her experience and give back to others in the invisible illness community.

My name is Emily Levy and I am the CEO and Co-Founder of Mighty Well. We create stylish and functional medical accessories.

I am a graduate from Babson College and I have severe chronic neurological Lyme disease. I first got sick in 7th grade, but because I never had a “bulls eye” rash, doctors misdiagnosed me with acute mono.

Over the next seven years, ten different doctors misdiagnosed me.

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InvisiYouth Spotlight Story Program

Teens and young adults with chronic illness often fall into the gap between pediatric and adult healthcare, but not with InvisiYouth Charity! We created the InvisiYouth Spotlight Story Program to provide a platform for young people to share their health stories, advice and goals on their own terms. These are the empowering true lives of genuine healthcare warriors, the youth patients InvisiYouth loves. While we highlight one at a time, our Spotlight Archive has all our former Spotlight Story writers.

Check out our categories in the sidebar and click Spotlight Story Program for our latest Spotlight writer, or click Spotlight Story Archives to catch up on all the young adults that have shared their stories with us.

If you want to share your medical story, or know someone who should have their voice heard, email our founder, Dominique at dominique@invisiyouthcharity.com!  We want to hear from you!

Spotlight Story Program: Caroline’s Story

Meet Caroline Wallendal

Life as a teenager is challenging and complicated for anyone.  Add on top of that a life-threatening and changing illness like Cystic Fibrosis, and it is clear that every day brings its own unique experiences. Caroline Wallendal has not let her illness slow her down, in fact, she has used her experiences to strengthen her in all her achievements.

Even if I may look like a normal 16-year-old girl, there’s a lot more to me that most people don’t usually see. When I was just three months old, I was diagnosed with cystic fibrosis (CF). CF is defined as a genetic disorder mainly affecting the lungs and digestive system, but most definitions can’t describe the impact that it can take on one’s life. When I was younger, I did get sick and have some days that I felt like I just had to stay in bed, but I have been fortunate that I don’t have long stays in the hospital as often as some patients do. Even though I didn’t get super sick too often, I still had many challenges and I wouldn’t consider myself as having a “normal” childhood. I always had to take extra precautions in school and I couldn’t participate in all activities like everybody else because of my health.

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