Cushing's Info

Kim Yaman works two jobs to help pay for her mounting health care costs. Yaman has Cushing's Disease, a rare tumor of the pituitary gland.

BY SARAH AVERY - Staff Writer

Galvanized by the difficulties a Cary woman has had paying medical bills despite two jobs and health insurance, a group of more than 60 community activists gathered in Raleigh on Saturday to raise support for a health care reform bill.

The group, all friends of Cary grandmother Kim Yaman, fanned out from downtown Raleigh to knock on doors and give out information about bills being considered in Washington.

A vote in the U.S. House of Representatives was on tap Saturday.

"I guess I'm a rallying point for why we need health care," Yaman said.

Yaman, whose story was featured last month in The News & Observer as part of a series about health care reform, has Cushing's Disease, a rare tumor of the pituitary gland. The illness causes weight gain, muscle weakness, high blood pressure and bone loss, among other problems.

Jackie (samsmom) first started dealing with Cushing's in her family when her youngest child was born in 1999.

Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.
Download from amazon.com: Mystery Diagnosis

Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.

Prevention:

People who have Addison's disease should be taught to recognize signs of potential stress that may precipitate an acute adrenal crisis (cause it to occur suddenly and unexpectedly). Most people with Addison's disease are taught to give themselves an emergency injection of hydrocortisone in times of stress. It is important for the individual with Addison's disease to always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency. Never omit medication. If unable to retain medication due to vomiting, notify the health care provider.

Symptoms:

• headache
• profound weakness
• fatigue
• slow, sluggish, lethargic movement
• nausea
• vomiting
• low blood pressure
• dehydration
• high fever
• chills shaking
• confusion or coma
• darkening of the skin
• rapid heart rate
• joint pain
• abdominal pain
• unintentional weight loss
• rapid respiratory rate
• unusual and excessive sweating on face and/or palms
• skin rash or lesion may be present
• flank pain
• appetite, loss

New Blog Post! Robin wrote a great blog post about Jackie and Sam dealing with Adrenal Crisis.  This is a very important article that all should read.  Be your own advocate!

New PDF! Managing Adrenal Insufficiency

New Podcast! Podcast: Adrenal Crisis

If left untreated, adrenal insufficiency can cause serious illness or death. But by working with their doctors and nurses, patients can learn how to manage this condition.

Robin (staticnrg) writes in her blog, survive the journey...

The Power of Online Communities and Support Groups

I witnessed a miracle today. I can't even tell you much about it because it isn't my information to share without permission from the parties involved. I can tell you it is something that would never have happened without the loving, caring, EMPOWERED support of an online community on the Cushing's Help message boards.

You see, people got involved. Real people. People who know the illness, who know the doctors, who know where to turn for help. These folks are empowered on their own, but man, when they come together and work together, miracles are wrought. There is no way a doctor-centered site can give the information and resources the Cushing's community gives. It's simply impossible to do that for everything about which any one site tries to give information.