For 64 years, Carol did not know the cause of her unexplained recurrent fevers and other debilitating symptoms, but despite that her life has been, and continues to be, full of adventures.
I have been blessed with a happy life. My story is meant as a message of hope for all, but especially for patients with autoinflammatory diseases.
As the youngest of six children growing up in rural Vermont, I always knew I was different. At the age of nine months I was hospitalized for several days with an unexplained high fever. Throughout my life I have experienced recurring flares of high fevers, abdominal pain, vomiting, painful red rashes, muscle pains, etc. I missed a lot of school, but luckily I was a good student, and stayed on top of my studies. When I was feeling well, I did all the normal kid things– I rode my bike, went to the community pool, skied, did sleep overs, went to camp, etc. Early on, my parents gave up on main stream medicine and I saw a chiropractor. I might add, no one else in my family exhibited any signs of illness.
Although it took me longer than four years, I graduated with honors from the University of Southern Maine with a B.S. in Business and Economics. When I married my husband in 1975, I inherited a fabulous family including two step-daughters. As years went on, we added a special son-in-law and entered grandparenthood with five beautiful grandchildren.
By this time, I was dealing with additional symptoms with my flares, including eye issues (episcleritis, marginal keratitis), trigeminal neuralgia, and episodes of hives. The stomach aches left me doubled over in pain and in bed for two days or more. I also experienced many urinary tract infections and a kidney infection. Somehow, I soldiered on.
Walking the Great Wall of China is one of Carol’s many adventures. At the age of 64 with genetic testing, she learned what her mystery medical condition is. She has TRAPS (tnf receptor-associated periodic fever syndrome).
At the age of 64, after a lifetime of struggling with my unknown, chronic and sometimes debilitating illness, I was diagnosed at the Mayo Clinic in Scottsdale, AZ with TRAPS. When I received the genetic results in April of 2011, I wept. I was validated, and I finally had a name to all my bizarre symptoms! I have been hospitalized four times, and sent to multiple specialists–including a trip to Boston, from Maine where we live. I have endured a zillion tests–not always pleasant. There was never an answer, although I never gave up hope. I was a mystery until the Mayo Clinic.
Carol with Muhammad Ali.
My illness has not defined me, or controlled my happiness and my life. I decided early on to live my life, and have chosen to take a positive approach to live well. I have learned to adapt by focusing on what I can control – eating a healthy diet, exercising, learning to say “no,” seeking support from friends and family, and actively participating in decisions about which doctors to see and my treatment. For multiple reasons at this time, I have decided to stick with prednisone for my flares.
I also worked part-time for decades, as needed, and when I was physically able for one of Maine’s largest general contractors. I even worked at the 1980 Lake Placid Winter Olympics. Some fun and memorable life experiences come to mind: Spending an afternoon with Muhammad Ali at his training camp in PA; having a white knuckle glider plane ride in Peoria, AZ, and a helicopter ride (up front with the pilot) into the Grand Canyon; 1994 attendance of the NCAA Final Four in San Antonio, TX; and lastly–making a cameo appearance in the filming at our home in Portland, ME for the television show “America’s Most Wanted.” It was a reenactment of a story. I have traveled extensively, including Alaska and I cruised the Panama Canal, walked the Great Wall in China, held a koala bear in Australia, and attended a family wedding in New Zealand. There are many more places I have visited and more on my “Bucket List” that I would love to visit.
Carol with her bonus grandchildren she met through her work with the Refugee Resettlement Center in ME.
I volunteered for many years for the Refugee Resettlement Center in Portland, ME as an American friend and a tutor to new arrival families from Azerbaijan, Bosnia, Vietnam, and other countries. Many became part of our family. I discovered, through volunteering that others have a very different kind of struggle. Somehow, my struggle seemed less significant than coping with a language barrier, limited employment opportunities, and adjusting to a new country and new culture. I learned that perspective really does make a difference.
Although any disease can be challenging, there is a silver lining in every cloud. Find gratitude and joy in your blessings. Live life!!
Carol married in 1975. Their family now includes 5 grandchildren!
Click here to learn more about TRAPS.
Click here to learn What is a Periodic Fever Syndrome?
God Bless you Carol. We lost our Daughter Kelly Ann to Traps in 1993 after 16 years if many hospital stays. Steroids did the damage a that took her.
Two grandchildren have it only one with moderate issues. we are Wife, Irish and me Scottish decent.
Two nations right next to each other. go figure.
Hi Carol – I have a similar story, I’m a lawyer and law professor in Chicago, I was diagnosed in 2008 at the Mayo Clinic in Minn. I am feverish as I write this; my eyes are burning and I hate that feeling. I’ve been through so many tests. I try not to take steroids (or pain medicine) but suffer from frequent attacks or episodes. I hope you’re feeling okay and just know that there are others out there, if that’s of any comfort. I do look for joy and happiness, thanks for sharing your story.
Walter, I’m so sorry to hear about Kelly. My Dr. constantly warns me of the pitfalls of steroids. 🙁
paul
Hi Paul,
I’m sorry to hear that you are in a flare now. Did the doctors discuss other treatment options? There are many other good treatment options for periodic fever syndromes if steroids are not right for you.
Please feel free to join our Facebook group – we have lots of adults like you there who can offer support and advice.
https://www.facebook.com/groups/nomidalliance/
Jennifer
Hi, My name is Jack Kempf My brother is presently in the
hospital. He has been sick all the symptems of traps for sometime. We had gone to another hospital a few years ago.
the doctor had done his residency at the Lahey Clinic in Burlington,Ma.He had mentioned traps as a possibility. One of the Problems we have run into is the infectious
Doctors around here are not familiar with it.Our maternal
grandmother was Scotch Irish. Our Maternal Grandfather was
Full Blooded Irish.My Brother is at Miriam Hospital in Providence, R.I.
Hello Jack,
I’m sorry to hear about your brother. Rheumatology is the main specialty for autoinflammatory diseases, so it would be best to find a rheumatologist. You are welcome to join our Facebook group – lots of good advice in the group and we can help with doctors. You can also email our president Karen Durrant at karen@autoinflammatory.org for help. Here is the link to the FB group – https://www.facebook.com/groups/nomidalliance/
Jennifer
Hi Carol I am 17 years old living with TRAPS. I was diagnosed at 2 years old, it started when I was around 9 months old. I have been hospitalized countless times since. My longest hospitalization was 2 1/2 weeks due to serverity of joint pains throughout my whole body making it almost impossible for me to even sit up. My highest fever was 106. I really appreciate you putting out your story for others to see because I never met someone who truly understood the disease TRAPS.
I began experiencing periodic fever symptoms in my mid-50s — high fevers, muscle/joint aches, lethargy, night sweats, loss of appetite. Initial diagnosis was hematology-related, so I spent several years being treated accordingly, and unsuccessfully. A doctor at the University of Florida made the leap from hematology to rheumatology, thinking this was FMF. The treatment for it didn’t work. Advil managed the fever, that’s it. I was eventually referred to a rheumatologist at Mayo Clinic in Jacksonville, FL who is a specialist in recurring fever diseases. He performed DNA tests for FMF and TRAPS, both came back negative. He observed that blood tests during a fever event had C-reactive-protein (CRP) readings off-the-charts high. His first and second choice for treatment did not reduce CRP levels, and did not lessen symptoms. We reached a point where the next step in the process was to try Enbrel. Since my first injection of Enbrel, I’ve not had a single periodic fever event. Subsequent blood tests saw CRP values reflecting no inflammation at all. Current thinking is I have a newer mutation of TRAPS that isn’t tested for in DNA tests. I still have some occasional periods of fatigue, but nowhere near the symptoms I used to experience. Only negative is that Enbrel is a very expensive medication.
Thank you everyone for your comments. I apologize for the delay in responding but I lost my husband in 2016 and I am just coming out of my fog. I am now just reading these comments.
I am truly sorry, Walter, to hear about Kelly Ann. I can’t even imagine losing a child.
Paul, I hope you have been feeling well since posting your comment.
Jack, I am sorry about your brother. You are just down the road from me. I hope he is doing well now.
Thank you, Meaghan.
Wishing you all peace, joy and love.
Carol
Dear David,
Thank you for sharing your story, and it is so great to hear that you are doing so much better on your current treatment! I hope that continues.
Best regards,
Karen