Hannah's Story 

In many ways, Hannah is your average 14-year-old girl. She has two younger brothers, ages twelve and six, and comes from a loving, supportive family. She enjoys doing crafts, reading Harry Potter and watching Grey's Anatomy with her friends. She even finds the time to help two Burmese refugees learn English, an experience that has inspired her to pursue a future career as an ESL teacher.

However, Hannah's life has also been marked by profound challenges that few kids her age are forced to face. Several years ago, she began experiencing severe chronic migraines that kept her out of school for almost 2 years. Gradually, she began developing insomnia, then IBS, drops in blood pressure, sporadic episodes of hypothermia and intense itching. Her symptoms were such a mystery, that Hannah simply began referring to her condition as "Hannah Syndrome."

One day, when her mother was visiting the doctor, she began to talk to him about Hannah's afflictions. The doctor suggested that it might be dysautonomia, a rare disease that affects the autonomic nervous system. Sure enough, Hannah was properly diagnosed a few months later with postural orthostatic tachycardia syndrome, a subtype of dysautonomia. While the diagnosis offered Hannah and her family some relief, in many ways it marked the beginning of her battle.

Dysautonomia can affect everything from body temperature and pain sensation, to blood pressure and heart function. Hannah has been in the ER ten times, and even had to spend her thirteenth birthday in the hospital. Her condition is incurable, and because it is such a rare disease, the medical community has at present found few treatment methods.

Despite her disease, Hannah is determined to go about her life in as normal a manner as possible. She is not able to stay overnight at sleepovers where she might not get enough rest, but instead, has her father pick her up around midnight, and then bring her back the following morning. School can also present its fair share of obstacles. It is important that Hannah lead as stress-free a lifestyle as possible, which she often finds difficult to do as a ninth grader in high school.

Nevertheless, Hannah is currently significantly healthier than she has ever been since coming down with her condition. She accredits this improvement to her doctors, her "tough-love" parents and finding the right combination of medications. Perhaps just as important, she says that getting out of the "sick-kid mentality" has vastly improved her quality of life, and she believes that much of this is due to her involvement in Starbright World, Starlight's online community for seriously ill teens and their siblings.

Hannah first heard about Starlight Children's Foundation during a hospital stay, when she saw a brochure in the hospital's teen room. The next time she was in her room with her laptop, she visited Starbright World and has been an avid user ever since. Hannah says that when she first began visiting the online community, she was having a hard time coping with her illness. "I was convinced I was the sickest person ever and no one understood what it felt like," she recalls. "I hadn't been to school in months and didn't have many friends. But being on Starbright World made my life take a turn for the better. I have so many Starbright World friends that are sicker than I am – and still manage to have an almost-normal life. Whenever I'm having a rough night – if I'm sick or upset or just can't sleep – I can always sign onto Starbright World and know there are fabulous people that I can talk to."

While Hannah still struggles with her condition, her ability to cope with the day to day realities of her illness has greatly increased her well-being. "Starlight has had a huge impact on my life," she says. "I've replaced my pessimism with optimism and found so many wonderful friends. I really don't know where I'd be if I didn't have my Starbright World friends."