Giving hugs was all I could do upon meeting my porphyria family
Last month's PorphyriaPalooza offered many opportunities for connection
As I shared in my previous column, my husband, Daniel, my mom, and I drove to Chicago last month for PorphyriaPalooza. The event, held Sept. 13-15, was designed to bring together members of the porphyria community. Fifteen hours after starting our journey, we made it to the Windy City. I was so excited I couldn’t stand it.
Maintaining patience while checking in at the hotel was challenging, as I was still recovering from snapping at Daniel for not looking at GPS when giving me directions. Between my acute intermittent porphyria (AIP), which causes mood swings, and menopause, I struggle with my temper.
After checking in, we headed to our room on the sixth floor. We got settled in and then made our way to the “porphyria hub” on the 13th floor, which was designated as a safe room for any patients who needed a break.
I knocked on the door, and there appeared my beautiful friend from Wake Forest Baptist Medical Center in North Carolina, Dee Faust. All I could do was hug her. Dee is very special to me because she’s been there since the beginning of my journey at Wake Forest.
She serves as a clinical research manager there, and although it’s not her place to get attached to patients, we immediately formed a bond. Dee said, “It’s hard not to get personally involved when you care for someone else so much.” She has cried with me, held my hand, and hugged me every step of the way. I was beyond blessed to see her face shortly after arriving in Chicago!
As I was talking to Dee, in walked Kristen Wheeden, another beautiful soul. Again, all I could do was hug her. Kristen is the president of the United Porphyrias Association, as well as a fellow columnist here at Porphyria News. Over the past four months, I’d talked with Kristen multiple times over the phone, and we’d established a special friendship.
Not only did she help promote my book, “I’m Not Always Me,” but Kristen was the one who spoke with Daniel three years ago when he called the American Porphyria Foundation looking for help for me. Kristen referred me to Wake Forest, where I met Dee and was able to receive treatment for my AIP.
After lots of hugs and catching up with Dee and Kristen, it was time for PorphyriaPalooza to start. We headed downstairs and stood in line for the bus to the boat cruise. There, I met someone who has porphyria and has found inspiration in my columns. Hearing this absolutely blessed my heart. I am honored to now call him a friend. While on the boat, he gave us a priceless tour of Chicago. We even got to see a building with pie-shaped apartments.
After supper and a trip on Lake Michigan, Kristen introduced me to a very special person who, like me, has AIP. Katherine and I talked for almost two hours about our different journeys. Aside from my family, she was the first person I’d ever met who had the same disorder as me. Our symptoms are almost identical, except that Katherine is sensitive to light. This isn’t common in AIP, as skin sensitivity is typically associated with the cutaneous porphyrias. After we talked, I hugged her, and we all headed back to the hotel for a good night’s rest.
The next morning, we woke up bright and early and got ready. The day was all about team building, community, and support.
We shared our biggest fears about living with porphyria, as well as what a perfect day might look like if we were porphyria-free. Most people wanted a day on the beach. Because AIP has negatively affected my mood, my response was that I’d like to be nice to everyone again. I hate being mean to people for no reason or feeling angry just because someone has walked into the room. That’s not me!
The rest of PorphyriaPalooza was mostly about coming together — not only as a team, but as a family. By the time we left on Sunday morning, I had given more hugs in two days than I give my husband in a month. I left the event with almost 100 new family members. That’s what a gathering like PorphyriaPalooza is supposed to be about: community, family, love, and compassion.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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