THE STORY- THE VISION- THE HOPE
My name is Felicia Reinhard. I am many things. A visionary, writer, photographer, daughter, and friend. And on November 9th 2013 I became a fighter.
During the summer and fall of 2013 I noticed my body changing. I was feeling more tired, drained, and was getting sick more often. My body started to hurt when waking up and my mobility started to fail. At 22 years old waking up not able to walk is far from normal. After visiting my doctor and having my concerns be dismissed "because I was so young" I decided to take action myself. I knew something wasn't right and I was going to get to the bottom of it. I wasn't going to accept that I was "fine".
I called into Mayo Clinic in Rochester, MN and was seen right away. Within 3 days I was diagnosed with Ankylosing Spondylitis, and Autoimmune Arthritis that affects the spine, joints, and organs. My body was attacking itself and making me incredibly sick. After diagnosis, treatment started immediately which consist of various medications and infusion therapies which I receive every other week. I had a central line placed for easier and better access, and have gone through 2 in the last 3 years. Because of the nature of many of these treatments, including TNF infusions and chemotherapies, serious infections are common. In December of 2015 I developed Sepsis- a very serious blood infection caused by the medications that are supposed to help me. It was another blow and another bump on this long road. In March of 2016 I was diagnosed with another serious illness relating to my first Autoimmune diagnosis, Adrenal Insufficiency (caused by a small tumor to the pituitary gland. )This diagnosis was also made at Mayo Clinic after doctors failed to act on my symptoms and concerns.
Autoimmune Diseases are devastating, because they are often considered "invisible". From the outside I look "okay" or "healthy" even. Because these diseases manifest in flares people often have good and bad days, and even may reach clinical remission. But at this time none of these diseases have cures. There is no end in sight other then treatments that are created to help with symptoms and slow progression. For many kids and young adults facing Autoimmune Diseases the road is long and dim. There is no "end of treatment" no ringing of any celebratory bells. There is only hope.
My life changed forever on November 9th 2013. I instantly became a fighter, a warrior, and a hero in my own never ending story. I have learned that being my own advocate and voice has not once, but many times saved and impacted my life. There is just not enough awareness for those suffering from undiagnosed and diagnosed Autoimmune Diseases, and my dream is to help other children and young adults find their voices and get the awareness and encouragement they deserve.
I've heard it all-
"bUT YOU DON'T LOOK SICK?"
"wHAT YOU HAVE ISN'T THAT SERIOUS."
"Isn't it just arthritis?"
"Just exercise more!"
"be happy it's not cancer."
"you're just being dramatic."
"sleep it off."
Sounds harsh doesn't it? Would it surprise you that most of these statements have been made by family and friends? Unfortunately this is common with those suffering from these sometimes invisible diseases. Yes, these diseases are serious. No, I'm not being "dramatic" and I only wish I could just "sleep it off".
Living with Autoimmune Diseases for me means- It's waking up in pain every morning barely able to walk, having to have not one but two central line surgeries for ports to deliver my medicines, it's painful weekly port accesses and blood draws to constantly check my labs, it's having lines and devices put in bedside with no anesthesia while fighting sepsis, it's being chronically dehydrated no matter how little or how great my fluid intake is, it's running fevers because my body now has a difficult time regulating it on it's own, it's 6 hour Remicade and fluid infusions at the hospital - most of which I go to alone, it's scans and tests to check the status of my disease and if my medicines are working, it's frequent trips to more doctors then I can count, it's 5 hour drives to Mayo Clinic every 6 months to check in with the doctors who diagnosed me it's having my immune system be compromised from my treatments and always having a worry of getting sick, it's ER trips that turn into admissions that once turned into surgery, it's physical therapy and swimming classes in place of the horse back riding and figure skating I used to enjoy, it's having to cancel plans at the last minute because my body is just too exhausted fighting itself to let me enjoy the day. It's living inside a very broken body, but somehow still loving this life...because I only have one.
In March of 2017 I was diagnosed with two rare blood disorders and ended up in the hospital with a Pulmonary Embolism (a blood clot in my lung.) Just like the rest of my journey, this diagnosis was sudden and unexpected. I now am learning to manage blood thinners that include pills and injections, and am entered into a whole new world I never knew. But just like the rest of my life- I take each day and each challenge at a time. Thats the only thing we can do!
Hear Felicia Speak about her story on Windy City Live!
On May 10th 2017 Felicia was invited to Windy City Live to share her story and be a voice for those suffering from Autoimmune Diseases. To read the article and watch the video click above or RIGHT HERE!
AUTOIMMUNE DISEASE FACTS
Autoimmune Disease is a major health problem. Both kids and adults are equally affected by over 100 diseases!
Here are some facts you may not know:
• The National Institutes of Health (NIH estimates up to 23.5* million Americans suffer from autoimmune disease and that the prevalence is rising.
• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.
• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years of age.
• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.