By Karen Fragale
I live in Johnston, Iowa, which is just outside of Des Moines. I have two children, Christopher, 31, and Stephanie, 28. Christopher, who works in finance, is engaged and planning a wedding date in October. Stephanie, an accountant, lives with me and is my primary caregiver (cleaning/groceries/shopping). She has a 2-year-old King Charles spaniel who keeps us busy.
I was an IT manager before I was diagnosed with pulmonary hypertension (PH) in March 2010. I am on disability but spend time volunteering for both my diseases, PH and scleroderma. I needed to do something after I stopped being able to work. Writing letters, making phone calls, arranging meetings and scheduling speakers are things I can do. Volunteering is flexible, so if I’m having a bad day, these tasks can wait.
I am active on the Iowa committee to raise awareness and funds for my autoimmune disease scleroderma. We have a walk each year, but this year the walk and silent auction will be virtual. And every year I go to the Iowa state capitol to talk to our state senators and representatives about PH, scleroderma, living with chronic illness, insurance and drug prices.
It’s fulfilling talking to patients and advocating for our disease. I feel like I’m helping and doing something positive.
I help run the Iowa PH support group with Traci Stewart and plan a trivia fundraiser about every other year. We have about 90 patients and caregivers on our private Iowa PH Facebook page. Before the pandemic about 15 to 20 people attended our in-person support group meetings.
Lately, we have been having monthly virtual meetings. Our first virtual meeting was Saturday, April 18 with seven people. Half joined on computers with sound and video, and the other half called in by phone. It was wonderful to check in with everyone. The technology was very easy to work with and everyone enjoyed the meeting. The main topic was staying safe and sane in this during COVID-19.
One participant asked what he was going to do for the rest of the day because he missed us. Another participant was excited to be able to join the virtual meeting because she lives a bit too far away to attend in-person meetings.
I plan to volunteer for the PHA support line to help new patients and their families. It’s encouraging for newly diagnosed patients to talk to someone who has had the disease for over 10 years.
I am inspired by patients who are very ill but continue to march on with a smile and positive outlook. Someone in our group just had a double lung transplant and is doing so well. The smiles and bubbly personality on our virtual call last week just made my day.
Stay safe and sane like Karen and the Iowa support group. Find an upcoming meeting.