Hagerstown Family Shares Story of Daughter’s Battle with Lympangiomatosis
By MARIE GILBERT
3:32 p.m. EDT, August 18, 2012*
Most days, Alli Rogers is in pain.
This is the reality of the young woman’s life as she battles a rare disease — one for which there is no cure.
She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood transfusions.
She has had a partially collapsed lung and kidney failure.
And when she’s not undergoing treatment, she has a regimen of daily medications.
Despite these challenges, the 24-year-old doesn’t allow herself to feel defeated. Instead, she is the one lifting the spirits of those around her, often with a humorous story or a joke.
The gift of laughter comes easily to Alli, her mother, Linda Rogers, said.
“She’s always been a funny girl,” she said.
Some might say she’s one in a million.
Actually, she’s one in a very few.
Alli has been diagnosed with lymphangiomatosis . . .
In Alli’s case, it has affected her abdomen and lungs with accumulations of lymphatic fluid.
The disease is so rare, there are no statistics on how many people suffer from the disease.
Often, it is misdiagnosed, which makes Alli an exceptional case — one of a handful of people who have been told they have lymphangiomatosis. She was diagnosed with lymphangiomatosis in September of 2008 at the age of 20.
The diagnosis came out of left field, said her mother, Linda Rogers. There were no signs over the years that Alli was anything but healthy.
She was a bright, active and creative individual, who was in the gifted and talented program at school, loved to jump rope, play on the swings and take walks in the park.
“She loves animals, music, and photography and makes jewelry. And when she was able to work, she worked hard,” Rogers said.
Alli’s life was filled with promise until four years ago when she began experiencing symptoms that led her to a doctor.
She had shortness of breath, chest pain, weight loss, a rapid heart beat, anxiety, chronic cough — symptoms that mirrored pneumonia and bronchitis, Linda noted.
Alli’s diagnosis, however, wasn’t immediate.
“No one had ever seen anything like this,” Linda recalled. “They thought, when she first went in, that she had pneumonia or bronchitis. Then, one day during working hours, she had a breakdown — couldn’t breathe, her lips turned blue and she went to the emergency room where they did an X-ray and found the fluid. They couldn’t figure out where the fluid was coming from. That is when they did laparoscopic surgery.”
Linda said they found cysts on Alli’s spleen and her omentum (the flap in her stomach), which they had to remove.
“At that point, she stayed in the hospital due to a rapid heart beat,” Linda said. “She would then return to the hospital two to three times a week to manually have her lungs drained.”
“Alli also had a pneumothorax, which is a partially collapsed lung,” her mother added. “She also has had kidney failure and a white blood cell count that was extremely low. This is all over a span of four years.”
Rogers said it took several doctors to finally determine what was wrong with Alli.
Because so few people have lymphangiomatosis, Linda said it was difficult to get a handle on the diagnosis.
The family, which includes two siblings, was devastated.
“Shock and unbelievable distress were our first reactions, followed by hope and prayer for her recovery,” Linda said.
“The deranged lymphatics tend to invade surrounding tissues and cause problems due to invasion and/or compression of adjacent structures. Fluid that a normal person can drain off naturally, Alli cannot. She needs to be manually drained by syringe through her lungs and/or stomach. The fluid fills natural voids in the body and eventually can press against her lungs and other organs.”
Alli has been treated at Peninsula Regional Medical Center in Salisbury over the past four years, her mother said, and has had several major surgeries.
“In March, she underwent her most serious surgery — a procedure that removed a large softball-size mass that pressed up against her right lung — an accumulation of fluid which had hardened,” Linda explained. “They had to expand her lung and actually attach the lung to the wall of her chest cavity to keep it expanded. It has taken her several months of hospitalization to recover from this due to blood infections, anemia, malnutrition and a constant flow of intravenous antibiotics.”
Alli’s lowest weight was 117 pounds, her mother noted, “but she’s now at 127. She has been fighting since March to get her weight up, and is under doctor’s supervision due to the malnutrition.”
Rogers said Alli’s “current situation is tenuous and can change from day to day. She is resting comfortably and still is unable to get around as far as routine activities.”
Because Alli is unable to work, Linda said medical bills continue to pile up.
“Life for Alli,” a fundraiser featuring the Baltimore Mandolin Orchestra will be held in October at The Maryland Theatre.
Doctors have told the family that there is no standardized treatment for the disease and absolutely no cure.
According to her doctors, if she lives to see the age of 30 she would be lucky.
“But Alli has a lot of spunk and continues to believe in the future,” Linda said. “She has faith that she will recover and she fights every day to prove the doctors’ prognosis wrong.”
If you go …
WHAT: “Life for Alli,” a fundraiser featuring the Baltimore Mandolin Orchestra
WHEN: 3 p.m. Sunday, Octobe 31, 2012
WHERE: The Maryland Theatre, 21 S. Potomac St., downtown Hagers-town
CONTACT: Call 301-790-3500 or go to www.mdtheatre.org
MORE: The performance will feature Beatrice Gilbert, the BMO’s vocal soloist. All proceeds will help pay Alli’s medical bills and the required medications.
*Originally published online at www.herald-mail.com. Story used with permission from author.