Porphyria Cutanea Tarda (PCT)
I was almost 16 when my mother passed away from porphyria in 1982. She was technically diagnosed with PCT. At one point, my mother was on the court of our town's 100th year celebration and she looked absolutely beautiful. This was before I was born and she seemed extremely happy and radiant! From what I remember, my mother always had something wrong, but local doctors were diagnosing her incorrectly and really weren't sure what was going on with her. Finally, someone sent her to Mayo Clinic and they gave a name to her symptoms. They seemed to do everything that they could for her at the time. I was an only child and this was difficult to figure out and understand, but looking back, I think I now appreciate my mother more than ever.
She always wore clothing that would have her blend more into the crowd instead of something that would draw attention to her appearance, She also kept her hair short due to the sores in her scalp. She couldn't perm her hair anymore or wear make-up. This had to make her feel like she was all alone at times, like no one knew what she was suffering.
She used to be on a bowling team and was Bowler of the Year. She would actually travel a bit to be in tournaments. That, too, had to go when her hands started to crack more and more.
However, my mother was so supportive of me. Wearing long sleeves and a large hat, she would still coach my softball team or shoot hoops with me. She would help her father in the field by driving a tractor...still wearing her long sleeves and hat...no matter the temperature. The elderly ladies across the block would need help and she was the first one there to help them. Her nephew didn't really have stable parents at the time, so she was right there making sure he was cared for well. I know many healthy parents that wouldn't give that much of themselves while asking absolutely nothing in return!
My experience was as the daughter....the typical teenage daughter. I would help around the house, but generally after having to be told many times. I was wrapped up in my life and everything that went with growing up. I knew my mother had to go to the hospital from time to time and that I needed to stay with my grandparents when that happened. I knew that my father would be stressed at times and assumed that every family had similar issues. I was rather immature. in my opinion. I was a kind person, a good student, and involved with many activities, and I knew that this made my mother proud. Looking back, I guess that this is how I thought I could help her. I wish I could have been more of a friend to her and had been an outlet for her to share her fears and concerns. She wouldn't have had it that way though. She was very protective of both my father and me.
Looking back, I would give anything to be able to tell my mother how proud I was of her. She handled her disease with as much grace and dignity as anyone possibly could. It didn't stop who she was on the inside or her desire to help others. I now teach, have been married for 21 years, and have 2 incredible sons. While I make mistakes from time to time, I believe I have grown into a person who still wants to make her mother proud. I want to be like her. Her strength that she taught me while she was here has driven and helped me to get past many hard times in my life, including the loss of many family members, the hardest of which was losing my father in 2009.
Neither of my two sons have shown any symptoms of PCT and our doctor is aware of this disease in the family. I have been tested twice and everything has come back fine. However, I don't know what the future brings, so that is why I am so thankful that there is such a great support system out there with the American Porphyria Foundation. When my mother was diagnosed, there was no one for her to talk to and that had to be frustrating.
I understand and appreciate my mother more and more every day. I also know how pleased she would be to know that there are caring people out there who are helping others with this disease. What was her story? She was a giver and a survivor while she was here. My mother, Judy (Chambers) Coley, passed away on July 11, 1982 at the age of 40. Her lessons and love that she taught are still going strong and will continue through my sons and all who knew her. I applaud those that reach out to others and still live life because they can!
Vickie (Coley) Gehm
Thankful daughter of John and Judy Coley