15
JUN
2018

Advocacy takes center stage – Kathy’s story

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Kathy, 57, is the definition of a working woman. Before her scleroderma diagnosis, she was known to work 65 hours per week. And even as her symptoms progressed, she maintained a 50-hour work week. It wasn’t until Kathy started spending more time in the hospital than at work, that her doctors told her she had to cut back.

Although she’s had to give up the title of ‘employee,’ she now puts her time, energy and work ethic behind a new one: ‘advocate.’

Kathy was diagnosed with scleroderma in 1995 when she was 34 years old. At first, Kathy was having trouble with severe constipation as well as trouble eating. She also experienced hyperpigmentation on her face, broken blood vessels on her back and hair loss.

With these symptoms popping up, Kathy decided to see a doctor. Immediately, her doctor detected scleroderma and sent Kathy to a rheumatologist and dermatologist where they did a biopsy and ANA. All the tests came back positive for scleroderma.

After Kathy’s diagnosis, her symptoms and time spent in and out of the hospital increased. In 1996, Kathy had laser surgery on her face to reduce her hyperpigmentation, a procedure she calls the most painful experience she’s had in her life. She then found out she had endometriosis. Then, that her internal organs were attached to her abdominal wall and nothing was working properly. To remedy this, her doctors went in surgically, took everything apart and put it back together.

She started having resections of the intestines, a procedure that continued up until 2002. In 2002, they did an ileostomy. Kathy was then put on TPN (total parenteral nutrition) for two years and went septic twice during that time. She had a port put in her chest and was in the hospital for a while. In 2004, Kathy met her current husband and moved to New Jersey. After moving, they did a feeding tube and she found out she had gastroparesis. In 2006, Kathy’s doctors put a feeding tube in her stomach to try and bypass everything.

Now, to maintain her symptoms, Kathy sees a GI doctor every three months (to get Botox and dilation in her esophagus and stomach), a heart doctor and kidney doctor. She’s also a vegan, and although she doesn’t eat much in general, tries to have a little bit of vegan food and a shake each day.

Despite her health complications, Kathy strives to maintain a positive outlook. She volunteers at the Scleroderma Foundation Delaware Valley Chapter. She has a great team of doctors in both Connecticut and New Jersey, as well as a great support system in her husband, family members and extended family.

And it’s support from these people, combined with her unshakable work ethic, that has inspired Kathy to get back in the game.

Kathy started working out again, an activity she loved before scleroderma. You can find her at the gym at 3:45 or 4:00 every morning. She’s putting in the work to stay mentally and physically fit, but also to prepare her for her next life adventure: Mrs. America.

Kathy will be receiving the title of Mrs. Camden, her current New Jersey county, in August. With this title, she’s going on to compete for Mrs. New Jersey next year to ultimately get her in the running for Mrs. America. Although coming out of her shell is hard for her, Kathy is determined to get on stage and speak up for her platform of scleroderma.

Ultimately, Kathy would love to do classes and conferences to speak to people about this hard disease. If she can help even one person through the process, she says it will fulfill her life.

We’re eager to see Kathy hit the stage on her new adventure. She’s put in her work, her time and her heart. And even after the pageant, if she doesn’t come in first, second or third, Kathy will view the experience as a win.

Because she’s won not only for herself, but for scleroderma.