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Last month was PI Awareness month, but PI is something SparkleSister Wendy Larsen deals with every single day—and it’s not a fun mathematical “treat.” So what is PI? Primary Immunodeficiency diseases, a group of genetic diseases that affect all or part of the immune system. Sound familiar? You may recall Bubble Boy, who was a real person, had a PI disease that left him without any immune system at all.
“My specific disease is Common Variable Immunodeficiency Disease or CVID. The common does not mean it's a common disease, rather it is the most common form of PI. CVID is a rare disease that most doctors have never even heard of,” said Wendy. Her body does not produce antibodies, so she gets them from donated plasma, IV immunoglobulin infusions once every three weeks to be exact. This is Wendy’s lifelong treatment plan, and the only way she can lead a somewhat normal life.
“In my case, my immune system cannot function and something as simple as a common cold could be life threatening. I have quite a few complications and other medical conditions that are a direct result of the CVID, from severe asthma to autoimmune diseases.”
Despite the challenges, Wendy refuses to take no for an answer. “I will be the first to admit, I am incredibly stubborn. I've been told by many specialists they have no idea how I'm able to train for and run distance races, but luckily I have an incredible team of some of the best doctors in the country that support me fully and help keep me running.” Every workout is a struggle, and everything is closely tied to her infusion schedule.
“I have to be very careful three days surrounding my infusions because some of the many side effects of immunoglobulin infusions are aseptic meningitis and flu-like symptoms. Once I am past that initial 24 hours after my infusion though, I feel good for about two weeks and then start slowly feeling more and more fatigued again until my next infusion.”
Wendy said anyone with a chronic disease knows there are good days and bad days, but she refuses to give in to this disease because it will be next to impossible to get going again.
“Continuing to push myself beyond my limits has improved my health by leaps and bounds above where it would be without it. I have managed to improve my lung capacity to nearly 30 percent above the normal lung capacity in the last year,” said Wendy. Her pulmonologist says the improvement is a direct result of running.
“I still have severe asthma, but because I have such great lung capacity, I am able to compensate for some of this. Although I have weakened bones because of all the steroids I've been on over the years, a connective tissue disease, and multiple types of arthritis, the running has helped prevent even further damage to my joints and bones. Running does strengthen bones. I know there will come a day where I am no longer able to run, but that day is not today!”
So where does SparkleSkirts fit into Wendy’s story? “Between thyroid disease, bad genes, and some of the medications I'm on, I've always struggled with my weight. All of us ‘fluffy’ gals who try to work out know how tough it is to find functional workout clothes that actually fit. Most athletic clothing companies do not carry plus size workout attire, and those that do aren't designed to fit a plus size woman's body anyway. SparkleSkirts are a game changer for women like me.”
After hearing about them for a couple of years and not wanting to spend that much money on a running skirt, she finally broke down and bought her first one last year.
“They are worth every penny! Not only do they fit but they are cute and incredibly functional as well. It may seem silly, but putting on a SparkleSkirt makes me feel good about myself and gives me more incentive to go workout.”
Wendy’s proactive approach to her disease does not end with her physical fitness journey. Recently, she was in Washington DC meeting with legislators about health care issues as part of theImmune Deficiency Foundation's (IDF) Advocacy Day.
As far as national health advocacy organizations go, Wendy said IDF is small because it is a small, rare disease community. That makes funding harder to get. A major source of IDF’s annual funding is through the Walk for Primary Immunodeficiency, but given their limited resources the organization cannot host a walk in every city yearly, so it offers a virtual walk. This year Wendy hopes to raise $2,000, doubling her total from last year, for the organization that helped her tremendously with her diagnosis.
“In addition to advocacy work, IDF funds research, organizes local support groups, provides educational meetings throughout the country, offers education for health practitioners (because many doctors have no clue what this disease is), and has a national conference every other year for patients and families affected by PI.”
Beyond IDF advocacy and fundraising, Wendy’s most important endeavor is spreading the word about plasma donation. “Everyone is familiar with blood donation, but plasma donation often gets overlooked. It is vital to those of us that have PI diseases that people donate,” said Wendy.
Let’s support Wendy by spreading the word—please share this link with your friends and encourage them to visit http://www.donatingplasma.org for information on plasma donation. Anyone who makes a donation to Wendy's fundraising efforts between now and August 1st will be entered into a drawing for a $20 SparkleSkirts gift card. Just be sure to put SparkleSkirts somewhere in the Personal Notes section of the fundraising form when you make your donation.