Katy’s Story
By: Sue Gehling

From the beginning of her life, our 17-year-old daughter, Katy Gehling, has struggled with health issues. At two weeks old, she was hospitalized with a potentially life threatening virus called RSV. At nine months old, she developed giardia, a parasitic infection. She experienced abdominal pain, diarrhea, and had difficulty gaining weight for several years when she was a toddler. She has suffered with allergies and asthma. But beyond all that, she has experienced constant and unusual fatigue.

After years of countless doctors’ visits, Katy was formally diagnosed with CFIDS in 2000 and with fibromyalgia (FM) in the fall of 2005. She experiences many of the symptoms commonly associated with CFIDS such as muscle pain, intense headaches, short-term memory problems, dizziness, sensitivity to light and sound, reversed sleep cycle, un-refreshing sleep, cognitive difficulties, “brain fog” and, of course, intense, overwhelming fatigue.

CFIDS and FM have narrowed and forever changed Katy’s life. In the first grade, Katy was so exhausted that she often had to put her head down on her desk — she vividly remembers feeling that she was different than the other children in her class. Katy was home schooled second through fifth grades and has since tried to return to school each year on a part-time basis. Today, although she is technically a junior in high school, Katy has yet to successfully complete one full semester in school.

Through it all, Katy has maintained a positive outlook on life. She has a passion for reading and writing and following her beloved Boston Red Sox. She has recently become an active member of an online support group for young people with CFIDS. She truly enjoys reaching out and offering support to new members. Katy is currently in the middle of a 30-day in-patient stay at Spaulding Rehabilitation Hospital in Boston, participating in their pain program. The last thing she did before heading to the hospital was to email a fellow support group member who was having a hard time coping with the illness.

Frustrated by the lack of funding for CFIDS research, Katy has looked for ways to increase the public’s awareness of the disease. So when a support group member asked her whether she knew of a CFIDS awareness bracelet, Katy decided to design one herself!

Katy’s CFIDS awareness bracelets have sold in the United States and as far away as Australia, New Zealand and Norway. All proceeds from her bracelets sales are donated to the CFIDS Association of America to support CFIDS research. Katy’s prayer, and ours, is that this illness will be understood and acknowledged by medical professionals and the general public. And we hope that someday soon there will be an effective treatment and a cure so that people with CFIDS will no longer have to suffer the physical and emotional effects of this devastating illness.

For more information about Katy’s CFIDS Awareness bracelets, please send an email to cfids.awareness@gmail.com.

The CFIDS Association has dedicated a special section of its website to the information needs of young people with CFIDS. We believe that with resources and support, young people with CFIDS can achieve their goals.

Young people with CFIDS, their parents, siblings and educators can find valuable information and encouragement at http://www.cfids.org/youth.asp.

Interested in finding a support group for young people with CFIDS? Visit http://www.cfids.org/youth/ylinks.asp.