February 8, 2017
As everyone seems to be trying to stay true to their New Year Resolutions, some were daring and used a pen, others are like me and preferred to make sure their new hopes and goals could change with the ease of an eraser. Recently, I’ve been hearing from a lot of you wanting to know about the tips and tricks I’ve learned over my spoonie years to get off on the right foot in 2017 and balance my two competing lives: my work life and my illness life. And especially since my latest flare-up of a RSD episode after my injury a few months ago, I’ve had to delve back into this balancing act a lot more. I’m like every one of our youth, working hard to find the ways I can still work while not hurting myself. As I tell each medical group I speak to: “Find the ways to compromise the treatment plans without compromising your patient’s health.”
Continue reading New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life
Meet Brittany Foster
Her heart may have given Brittany Foster lots of medical struggles throughout her life, but she has one of the kindest and passionate hearts out there. Brittany has used her experiences through pediatrics into adult healthcare to give back, to inspire others to take control of their health journey and become their own medical advocates.
From birth to 24 years old I have been diagnosed with quite a few conditions. Some chronic, others have been able to be “fixed” or “treated” with surgery.
At birth I was born a “blue baby” and would later be diagnosed with pulmonary hypertension, right aortic arch, and a large VSD. These conditions have later led to having a thoracic bypass surgery due to anomalies related to the right aortic arch, atrial tachycardia, congenital sinus node disease, sinus pauses, bifascicular bundle branch blocks, and a permanent pacemaker implant.
My other conditions I faced as a child were a surgical repair for currarino triad syndrome which is a sacral teratoma. Throughout my teen and early adulthood, this has left me with chronic bladder control problems, and chronic lower back pain. An intestinal surgery I had for a blockage as a newborn later affected my late teen years due to scarring of the fallopian tubes. This led me to have both fallopian tubes removed at 18 years old as well as one of my ovaries removed at 21 due to endometriosis and large cysts.
Continue reading Spotlight Story Program: Brittany’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.
Continue reading Spotlight Story Program: Rachel’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.
Continue reading Spotlight Story Program: Erin’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.
Continue reading Spotlight Story Program: Emily’s Story
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 firstname.lastname@example.org! We want to hear from you!