Health advocates are part of a new profession to help patients remove barriers to the care they want and need. This emerging field helps patients by building skills and connecting them to resources so patients can participate and drive their health care experience and make the best decisions possible.
Making a Positive Impact with Mom by My Side
By Aiden Gallagher
When I was 11 years old, I started having strange symptoms: joint pain, a stabbing pain that felt like 10,000 knives in my stomach, extreme fatigue and a rash on my face. After what felt like a million rounds of blood work, and 15-20 doctors, I learned that lupus was causing my pain.
In the 9 years since my diagnosis, I have come to learn how cruel and mysterious this disease can be -- 100-plus hospital visits tend to have that affect. But instead of letting it get me down, I have channeled my energy into helping others who have lupus, and advocating for research and treatment. I know that what I have learned from my experience can have a positive impact on the lives of others.
On my first day of chemotherapy treatment, I gave a friend, who was also hospitalized and undergoing treatment for lupus, a purple teddy bear with a Livestrong bracelet. I liked the idea of strength in the face of our treatments. As she opened the gift, something clicked. We should have lupus bracelets, we said, as a way to start conversations about lupus and help people understand this devastating disease and its impact. We contacted the Lupus Foundation of America to help us with the cause and they asked us to be their teen spokespersons.
With the help of the Lupus Foundation of America, I am able to raise awareness about a disease that so many do not yet understand. I had the opportunity to meet and participate in a photo shoot with Kerri Strug, the Olympic gold medalist, in NYC, I’ve participated in the national lupus advocacy summit on Capitol Hill and I spoke at the launch of their Help Us Solve the Cruel Mystery™ National Bus Tour in Washington, D.C.
For me, life with lupus means never knowing what each day will bring, but I have been committed to beating lupus since I got diagnosed. And while the drive to never give up and channel frustration into something positive must come from within, there is no doubt in my mind that my mom has been an incredible influence on my efforts. With each battle I’ve encountered with lupus my mom has been by my side helping me fight. She has given me strength and courage to beat this cruel mystery. And so as we prepare to celebrate Mother’s Day, I’m reminded of my mom’s never-ending love and support. I’m reminded of her motivating words to push forward. And I’m reminded to tell her …. “Thanks MOM!”
Watch this interview with Aiden and her mom, Elizabeth, to learn more about Aiden’s experience with lupus.
Honor Mom with a Bouquet of Hope
This Mother’s Day, forgo giving mom traditional flowers, instead honor her with a Bouquet of Hope eCard.
Make a donation in your mom’s name to the Lupus Foundation of America and send her a Bouquet of Hope e-card!
You can make a one-time tax deductible gift or celebrate your mother year round by selecting our monthly gift option! All donations will generate a Bouquet of Hope e-card that will be sent to the designated email address on Mother's Day, Sunday, May 11, 2014.
In 2011, Bonnie and Todd Kassel learned their 12-year-old daughter Taylor was diagnosed with lupus nephritis. Their angst transformed into lupus awareness, advocacy and action. Read more.