I apologize for the Geocities/Yahoo! guestbook, since you can only leave a few lines of information on it. I am looking to replace it with a bulletin board that is MUCH better. Once I do that, you will have the opportunity to leave as much information as you wish.
Although the group is based in Winston-Salem, North Carolina, there is an abundance of information and support that can be shared with people around the world.
Hearts and Hands was founded by a nurse who eventually found out that her son suffered from a rare disease, loin pain hematuria syndrome. If you suffer from loin pain hematuria, please click on LPH SYMPTOMS AND REGISTRY; efforts are underway to give more informations about this rare illness and to gather stastics about the people who have it. Read on to hear the story in detail.
For anyone with a rare illness, the following link is invaluable:
NORD Home Page (National Organization for Rare Disorders, Inc.)
offers excellent information about hundreds of rare conditions, and is a good starting point for learning about a particular disorder.
Another good resource is a book entitled, The Physician's Guide to Rare Diseases, ed. by Jess G. Thoene, M.D.
Her family's nightmare began in April 1989 when son Jamie suddenly became seriously ill. He woke up doubled over in pain in his side. As a mother of four and as a nurse, Plummer knew it was probably nothing serious. Most likely appendicitis. A trip to the emergency room would uncover the problem.
But it wasn't appendicitis. There was blood in his urine, but it wasn't kidney stones. It took three years of intense searching for the Plummers to discover that Jamie had an extremely rare kidney disorder, one so rare that there were fewer than 100 documented cases in the world. Jamie has loin pain heaturia syndrome.
There is no know cause, no know cure, no known prognosis. But is is at least identified.
Plummer, however, wasn't satisfied with just a diagnosis. She realized that her three-year search had produced a wealth of information that could help other families facing the same nightmare. So in January 1993, she formed Heart & Hands, a support group to provide emotional, spiritual and educational resources to families of people with rare or undiagnoses illnesses.
"I had the advantage of being a nurse," Plummer said. "I had some medical knowledge. I could say, "This is just not right," and the doctors trusted my judgement. Not all parents have that advantage."
Being a nurse didn't help all the time. She ran into doctors who, once out of ideas, suggested she or Jamie needed to talk to a psychiatrist; doctors who, one handed a diagnosis from another hospital, refused to accept its conclusion; insurance plans that, once a specialist was located in Roanoke, VA, denied coverage.
It has been a frustrating ordeal, one the Plummers would like to help others through, she said.
Jamie was hospitalized seven times, was rushed to emergency rooms 14 times, went through 14 surgical and medical procedures, including one major surgery; and was in the care of 15 different doctors who administered countless tests and examinations.
Jamie told him mom at one point: "If I were a hurt animal, somebody would put me out of my misery."
The search eventually led Plummer to the Mayo Clinic in Rochester, Minn., where she and her husband, Ronald, took Jamie in April of 1992. One of the tools she provided that helped in their diagnosis, the doctors told her, was the journal she had kept since Jamie's problems started.
Loin pain hematuria syndrome was first diagnosed in women on birth control pills in England in the '60's, Plummer said. Then men started developing it. Cases were seen in the United States beginning in the '80's.
So far, the group has helped about nine families. It is the only one like it in North Carolina. "You don't have to have a diagnosis for the group to help. You're just as sick undiagnosed, and many times you're more frustrated."
Through the group, members talk about how to look for information and how to approach doctors. They learn that it's OK to seek second or third opinions.
And they learn that life with a rare or undiagnosed illness can be fulfilling.
Jamie Plummer was an active 16 year old when this all started. He played tennis for the school team and had an after-school job. Now 21, he has adjusted to the physical limitations--he has lost a lot of weight and tires easily. He continues to go through episodes of passing massive blood clots, right now every week or two, and they manage his symptoms with pain medication. He can be so weakened by an episode that he passes out.
He has been working part-time and going to college part-time, but he's about to decide that full-time work would be easier. His supervisors at work have been totally supportive, making his duties less physical, visiting when he's bed-ridden, calling when they are concerned that he's overdoing it. He and his girlfriend are engaged.
His biggest fear, however, is that he will have to give up work, his mom said, and not be able to support his family.
Caring for a child--now an adult child--who has a rare disease, Plummer admitted, is the toughest mothering she's ever had to do. But she keeps an upbeat outlook.
"I want other people to know that you can make it," Plummer said. "It's important for families not to give up."
Note from Webmaster: Jamie was married in 1996 to a wonderful woman and is still working! We are all very, very proud of him and he deserves much credit. He still has rough times, but keeps on going like the Energizer Bunny!
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Last updated 1/25/05
