Pittsburgh Tribune Review: Shaler Woman Battles Rare Disease
Shaler Woman Battles Rare Disease
By Bethany Hofstetter
September 16, 2010
(Editor’s note: This article originally appeared in the Pine Creek Journal/Pittsburgh Tribune Review
Every day Cindy Urso wakes up with a migraine-strength headache.
When the headaches aren’t completely debilitating and she is able to climb out of bed, she goes directly to the medicine cabinet.
“I have bottles of prescriptions, I feel like it’s breakfast, lunch and dinner,” said Urso, 41, of Shaler.
Urso is one of about 25,000 people in the United States struggling with Intracranial Hypertension (IH), a rare disease in which the spinal fluid pressure in the skull is too high causing severe headaches, vision loss or blindness from swollen optic nerves and numerous additional symptoms. Urso was diagnosed with IH in January 2009 after being plagued with unexplainable headaches.
In the past year, Urso has had seven surgeries to insert various types of shunts to try to relieve some of the spinal fluid pressure. However, the pressure still spikes landing Urso in the hospital almost every other month for a week at a time to correct the problem.
“I really, truly hope someday—for the time-being—for a medicine that can get us through the day comfortably and in the future, a cure,” Urso says.
The Intracranial Hypertension Research Foundation, based out of Vancouver, Wash., is the only nonprofit organization in the world devoted to supporting medical research of chronic IH, according to its website. Currently the IHRF is working to compile a global registry of individuals with an IH diagnosis and a neuro-imaging library of IH patients’ brain scans for scientists to research possible commonalities.
“There’s so little (research) going on and the need for it is so great,” says Jessica Tanne, of the IHRF.
In 2007, it’s estimated that the economic impact of confirmed IH cases was $444 million. That number would be higher, except there is no diagnostic code for secondary IH—cases of IH caused from another medical issue.
“There really needs to be a better solution, a lot of people are suffering,” Tanne says. “We really need people to know about this disorder and the effect it’s having on people and their lives.”
Life Before IH
Urso had an active life before IH. She was a teacher’s aide at Marzolf Primary, shuttled her children to and from after-school activities and cared for their special needs. Urso’s daughter, Ashley, 20, has Down syndrome, and her son, Jan, 14, has Asperger’s syndrome.
“For all these years, I’m so used to helping them, it’s sort of like the roles are reversed,” Urso says.
Urso’s husband, Jan, now is the sole breadwinner and takes overtime when he can, and the children have increased their responsibilities.
“I help her with everything—laundry, cooking, cleaning, feeding pets,” Ashley says.
Ashley says her mother is “strong and brave” to live with IH, but she misses the days of her mom taking her to cheerleading practice or spending a “girls day” out shopping together.
“Before she got IH, we had so much fun together,” Ashley said. “Now it’s been always a lazy day at home.”
Urso says IH is “a lonely disease” because so little is known about it and patients don’t “look sick.” During very difficult times, Urso turns to the Internet for support from others who are living with the disease. “If you have a really bad day, you don’t want to keep laying that all on your family,” she says.
Urso even made contact with another person from Pittsburgh who is living with IH. The two hope one day to be well enough at the same time to meet. Urso’s family continues to be her biggest support system and gives her the courage and determination to face IH everyday.
During September, IH Awareness month, she hopes to make others aware of the rare disease and how it affects others.
“I hope people realize not to take their health for granted,” Urso says. “I don’t want people to feel sorry for me or pity me, but know that there are rare diseases out there and to know there are people out there walking around struggling.”