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A support group for those with a rare disease

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A support group for those with a rare disease

Photo by James A. McBride

addisonssupportgroup-webMembers of the Addison’s Support Group of Holy Eucharist Parish in Cherry Hill, at a recent meeting.

CHERRY HILL – Jan Judge’s daughter is getting married, and the mother of the bride-to-be is nervous, and not just about usual wedding jitters, such as dresses, guest lists and cocktail offerings.
Judge, 59, worries about when and how much medication she needs to take. She has Addison’s disease, a rare, chronic endocrine disorder which results from the near or total destruction of the adrenal glands and loss of the hormones they provide the body. Common symptoms include fatigue, muscle weakness, fever, weight loss, anxiety, nausea, vomiting, diarrhea, headache, sweating, changes in mood and personality, and joint and muscle pains.
With proper treatment, some patients can live relatively normal lives, but lifelong, continuous steroid replacement therapy is required, with regular follow-up treatment and monitoring for other health problems.
President John F. Kennedy had Addison’s.
Fourteen years ago, Judge, then a physical therapist, was diagnosed with the life-threatening Addison’s. For the previous year she had been treated for sudden adult onset asthma. She had been taking steroids and the treatment effectively led to her adrenal insufficiency and to her Addison’s disease
Today, Judge also suffers with chronic fatigue, low endurance, irritability and depression, and has a craving for salty foods because of the body’s salt deficiency. (Her pantry is ever-stocked with pickles and potato chips). As the condition also can cause osteoporosis, she has had both hips and a knee replaced.
On days she does have energy, she tries to accomplish as much as she can, such as going grocery shopping and other errands, and catching up with friends, because she doesn’t know when days like that will come again.
“My friends have told me that is like when Jesus was forced to carry his cross,” she says. “This illness is my cross to carry in this life.”
A parishioner at Holy Eucharist in Cherry Hill, Judge didn’t know anyone else with the disease when she was first diagnosed with Addison’s,
The National Adrenal Diseases Foundation (NADF) estimates that “at least 10,000 individuals in the United States have this condition (this is probably an underestimation).” Some estimates put the occurance at only one out of 100,000 people.
Struggling to understand her illness and connect with others who suffered like she did, Judge, with the blessing of Msgr. William Brennan, then-pastor at Holy Eucharist, began an Addison’s support group at the parish 10 years ago. Today, with the support of the current pastor, Father George Seiter, the group meets twice a year for support, fellowship and medical updates.
Joanne Lyons, 46, from Medford, was first diagnosed with secondary adrenal insufficiency 18 years ago. A former medical technician, she first noticed the flyer for the support group at her endocrinologist’s office. Since then, she has attended the meetings and developed friendships.
“No one had ever met anyone” with Addison’s before the meeting, she said.
Because of their diagnoses, Joanne said, both she and Jan have developed diabetes. With a low immune system, as well, which makes the body susceptible to infection, Lyons also has a slow-healing fractured clavicle, brought on by osteoporosis due to the Addison’s.
Lyons also believes the disease was a factor in the breakup of her marriage.
Both Judge and Lyons are on permanent disability. And they both wear medical bracelets.
Judge laments the fact that Addison’s is not understood fully in the medical community.
“Before they are diagnosed with Addison’s, some people are told to see a psychiatrist,” she says.
Today, Judge runs the support group at Holy Eucharist, and is a Support Group Coordinator for NADF. She continues to raise awareness for the disease (April was Adrenal Awareness Month) through meetings, e-mails and conversations with others.
“Sometimes it is very hard for you to know what God wants you to do when your whole life is turned upside down,” she says. “I am still looking for what God wants me to do with this illness in helping others.”

For more information, visit the National Adrenal Diseases Foundation website at www.nadf.us, or go to their Facebook Support Group, called INSPIRE.