Elephantiasis: A devastating, but treatable, condition

Elephantiasis is a disease of the lymphatic system. What makes it so devastating, especially in advanced cases, is that the lower legs of the patient become gigantic. (Contributed Photo)

Although elephantiasis is neither a common nor well known medical condition, it is worth bringing to your attention because we have some cases of it in the commonwealth.

Last Tuesday I talked with Paul Gahlinger, M.D., Ph.D., who is medical director of the Kagman Community Health Center and is also the physician affiliated with Marianas Health, LLC, in San Jose.

Elephantiasis is a disease of the lymphatic system. What makes it so devastating, especially in advanced cases, is that the lower legs of the patient become gigantic. Although it is not fatal, it severely impacts the psychology and well-being of the patient.

This disease is common to tropical areas, including islands such as Yap and Chuuk. It is also prevalent in the Philippines, India, and Southeast Asia. Dr. Gahlinger visited several clinics in the Philippines and learned a great deal about treatment options. He may be the only physician in the Commonwealth who, along with the therapists at Marianas Health, can treat those with the disease.

Dr. Gahlinger recognizes that this condition can be treated and that those afflicted no longer need to suffer in silence. He also said that treatment of elephantiasis must follow a specific protocol, and that untrained physicians sometimes do the wrong thing.

Elephantiasis is a severe form a lymphedema. There are many forms of lymphedema but they all share one common trait: a lymphatic obstruction.

“This is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct and then the bloodstream. The condition can be inherited, though it is frequently caused by cancer treatments, and by parasitic infections. Though incurable and progressive, a number of treatments can ameliorate symptoms.  Also, tissues with lymphedema are at risk of infection.”  (Wikipedia)

Dr. Gahlinger said that the most common form of elephantiasis comes from a mosquito bite. The mosquito injects a filarial (parasitic) worm larva into the victim, and it grows and multiplies in the human body.  Then, some of the infected blood is re-introduced to another, similar, mosquito, and the cycle renews itself.

This form of lymphedema can be easily treated with antibiotics, and this was the case in the Marianas after WWII, when the U.S. brought in teams of health experts to eradicate a variety of tropical and parasitic diseases.

However, the cases of elephantiasis which exists in the Marianas today may be genetic in origin, notably among the Chamorro or Carolinian people.

Dr. Gahlinger discovered this because he sent blood samples for testing, and they came back negative for the parasite.  Dr. Gahlinger also said that if a person has lymphedema for a long time, the blood tests may not reveal it.

Another way to contract lymphedema are via cancer treatments, such as chemo, radiation or surgery—all of which damage the lymphatic vessels. This is especially true for some women with breast cancer, who may suffer horrible edema in their upper arms.

A third cause is genetic:  that some individuals are simply genetically predisposed to the disease.  Although this may be of academic interest to physicians, it doesn’t help the patient with the disease:  they’ve got it and they are suffering.

“It affect their whole life. Not just physically—where they can’t walk around—but also psychologically, because of being disfigured.  And the people with the disease here haven’t been treated—at all.

“One woman said that she went to eight different doctors and one of them said, ‘We don’t know what it is, and we can’t do anything about it.’

“That may be why I have only seen four people with it. I know there are others because the nurses have told me about them.  So, if I were to guess, I would say that there are another 15 or 20 people on the island with lymphedema.

“These people have basically given up on health care. We don’t see them because they have stopped going to the clinic or the hospital, because they think that nothing can be done.

“It’s very discouraging for the patient to go to all the trouble of getting to the hospital, wait to see a doctor, and then be told, ‘There is nothing we can do.’”

Even though Dr. Gahlinger had never seen lymphedema-elephantiasis before, he was deeply moved by a young woman who was devastated by it, and he decided to help not only her, but others with this condition.  The woman was depressed and didn’t even want to leave her home, because she had difficulty moving and felt she was ugly.

Dr. Gahlinger showed me a picture of her leg and it looked like a gnarled tree trunk.  You would never know it was the leg of a woman.

One man had such an advanced stage of elephantiasis that he couldn’t even get into a car; he had to be brought to the hospital in the back of a pickup truck.

I asked Dr. Gahlinger what a person with this condition can do. He replied that Marianas Health has physical therapists who have received specific training in this condition. The administrator for Marianas Health, George Cruz, went to the Philippines, recruited specialists and brought them to Saipan to work in his home health clinic.

“It’s important for anyone who has the disease, or who knows someone who has it, to get treatment as soon as possible.  It’s easy to treat at the early stages, but once it has progressed, it becomes more of a challenge.”

The best treatment for elephantiasis, or other forms of lymphedema, is called Complete Decongestive Therapy, which is a physical therapy treatment. This works well, but it takes time.

I asked Dr. Gahlinger what the earliest symptoms were, and he replied, “One leg is beginning to look a little bigger than the other.  So in the initial stages, the lymphatic system is still working, but is beginning to lag behind the healthy leg.”

“When we think of a disease—any disease—it’s a pathology, an abnormality. What really matters about a disease is the way that it affects the person.  So if we can prevent the disease by catching the pathology at an early stage, then we have stopped it from progressing further. That’s the goal.

“We have people here with the disease, are not being treated, but we have a new treatment protocol—Complete Decongestive Therapy—which can help them.”

For those who suffer with this terrible condition, Marianas Health can help them. It is located in San Jose, behind the Downtown market (across from the Oleai). Their telephone number is 233-4646. (Russ Mason, M.S.)