Active mom struck down by HTLV-1

Jean (not her real name) wrote a letter to the editor in an attempt to reach out to others who have also been diagnosed with HTLV-1 to share information and support. She said she hoped someone in the medical profession would read the letter and contact her to help.

It has not been easy coping, as she told Newsday in an interview yesterday.

Thirty-seven-year-old Jean said in 2000 she began “staggering” when she walked, and felt like she was going to fall.

“I used to be a domestic and when I went to work, pushing mops, and scrubbing the floor caused pain in my back. When I was scrubbing the floor I would go down and could not get up. I had to stop working because I could not take the pain anymore.”

Jean said her private doctor sent her for various tests — an MRI, x-ray, urine and HIV tests, and it was only in 2004 that after a blood test she was diagnosed as having HTLV-1.

By this time she had severe back pain, and said her foot was weak, and she could hardly walk.

Jean said her doctor referred her to Prof Courtenay Bartholomew at the Medical Research Centre for an explanation of what was happening. “Dr Bartholomew said it is a problem I can live with up to 100 years old. It cannot be cured. He said it cannot kill and I must build up my immune system.”

Jean and her husband have also tried to research her condition on the Internet. She said most people have never heard about HTLV-1 or how it came about.

Jean was making some progress with a physiotherapist who visited her at her home in St Augustine but stopped coming because Jean could not afford to pay for regular sessions. “My limbs get back weak and I cannot stand on my own.” She is on medication for the “stiffness” in her legs, and she takes vitamins C and E.

Jean’s husband, Harold, is upset by the change in his formerly “active” wife and recalled that she was a player on the women’s cricket team in the area.

“Then the back pains started and we made the rounds for treatment at different places. A lot of money was involved. The fees were exorbitant,” he said.

Aqua therapy, physiotherapy, massages and counselling were all recommended.

Asked about how his family life has been affected, he broke down during the interview.

“I can’t talk about that,” he said. Jean said, “He takes it on. I try and be strong. The most I can do is pray and ask the Lord for a cure.” Jean said her husband tried to get her into the physiotherapy at the Eric Williams Medical Sciences Complex but got an appointment date of September 15.

The couple have three children ages 21, 17 and 13.

Human T-Cell Lympho Tropic Virus-1 (HTLV-1) is a proliferative disorder of T-cells (white blood cells which are involved in the identification of foreign antigens, and activation and deactivation of immune cells).

According to information on the Internet, HTLV-1 has high endemic rates in South America, northern Oceania, tropical Africa and the Caribbean basin. HTLV-1 can cause HAM — HTLV associated Myelopathy which is a chronic progressive disease that can cause weakness and spasticity predominantly in the lower limbs. The virus can also cause ATL — Adult T-cell leukaemia, neurological disorders, degenerative arthritic pain and inflammation of the uveal tract of the eye.

HTLV I and II can be transmitted from mother to child via breast-feeding or childbirth, through sexual contact, and through blood contact, either by transfusion or by reuse of injection equipment.

There is no specific treatment although steroids can help ease discomfort and drugs help relieve muscle spasm. Physical and occupation therapy is useful.