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St. James woman with rare disorder mounts urgent search for kidney donor

Rachael Eisenson, center, is shown with her parents

Rachael Eisenson, center, is shown with her parents Charles and Deborah at their Nissequogue home on Wednesday, July 15, 2015. Rachel, 27, has a rare genetic condition that has left her in desperate need of a live kidney transplant as soon as possible. Because her family members are not a match, her parents, family and friends are trying to get the word out, hoping that a living direct donor with an "O" blood type comes forward. Photo Credit: Newsday / John Paraskevas

Rachael Eisenson's search has become desperate.

The St. James woman's body is under siege by a rare genetic disorder, and without a kidney from a live donor, the prognosis is grim.

As the days tick by, Eisenson, 27, and her family have intensified their search, with urgent pleas posted on Facebook and other social media.

Eisenson, a graphic designer, was diagnosed as an infant with familial dysautonomia, or FD, a disease that causes wild blood pressure swings and has triggered renal failure, leaving her kidneys on the verge of a deadly shutdown.

Doctors have told the family that without a transplant, she has only a few months to live.

The disease is found in 1 in 3,700 people of Eastern or Central European Jewish descent -- a tiny sliver of the global population. People with FD experience a wide variety of symptoms, but Eisenson's include trouble regulating her blood pressure, body temperature and emotions. She struggles to swallow food, and swelling in her feet makes walking painful.

"She's gone through a lifetime of hell, and she's handled it with dignity that is almost beyond appreciation," said her father, Charles Eisenson of St. James.

But, he added: "She's starting to wonder, 'Why me?' "

The family learned a transplant was needed in May, at the end of the semester for Rachael, who's earning a master's program in Web and multimedia design at Touro College.

"I wanted to keep up my grades and do as much as I can, even with everything I'm going through right now," she said.

Drawing on her design skills, she created a Facebook page to aid the search for a kidney. As time passes, though, the anxiety builds.

"I'm really #frustrated!! Could use some #thoughts and #wishes," she posted July 17 on the way to NYU Langone Medical Center to begin emergency dialysis in the intensive-care unit.

The unique symptoms of FD make addressing the kidney disease that frequently arises later in life challenging. Conventional therapies generally aren't effective.

"These are medically fragile individuals," said David Brenner, executive director of the Manhattan-based Dysautonomia Foundation. "Their bodies don't function the ways yours and mine do, and it's complicated to treat them for any kind of major procedure."

Eisenson's body can't handle dialysis well and her health is too fragile to wait for a kidney from a deceased match to become available and adjust to her body, her parents said.

Doctors said the organ must come from a living donor with type O blood -- the most common -- between the ages of 18 and 50.

While National Kidney Foundation statistics show that 70 percent of live donors in 2014 fit Eisenson's age range, the majority were the recipient's relatives.

Eisenson's family explored that possibility, only to be ruled out. Charles, 60, his wife, Debby, 58, and their three sons are all type B.

It's not unusual for patients to search on their own for live donors, experts say. The average time on the waiting list is three to five years and many patients can't wait that long.

A few potential donors have come forward, Charles Eisenson said, but none have fit all the requirements.

In the meantime, the family remains hopeful.

Earlier this month, at Charles Eisenson's 60th birthday celebration, he was thinking of his daughter as he blew out the candles.

"Nothing would be greater than my daughter getting a kidney," he said.

Those interested in donating can contact Marion Charlton, transplant coordinator at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, at 212-746-1742 or email her at mbc2001@nyp.org 

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