World Aids Day

Recently I signed up for the Enbridge Ride to Conquer Cancer. I needed to set a fitness goal with a reward. Helping to raise funds for the BC Cancer Foundation.

It’s perfect. Especially since the November 11 passing of an amazing person to whom I met, got to know, became friends with and admired. For his strength in fighting Cancer and for his conviction in helping to raise funds to research the cure.

I wrote down on a piece of paper all the people I’ve known amongst my family, friends and associates that have Cancer or have died from Cancer. There are eight.

Today’s it’s World Aids Day. Do you know anyone who has died of AIDS or who is HIV positive?
Personally, close to me – I don’t know anyone.

However, this time last year when I was in Uganda helping out at Mengo Hospital's AIDS Clinic, there were many. It was astonishing.

I spent time documenting their stories of hope. (Search Uganda Wishes for more).

The disease has stages. Ravaging the young and old in different ways.

Nutrition roots the progress. Especially in children.

HIV Positive Children (mostly orphans) at the AIDS Clinic.

It was a mother with two children that impacted me the most.

She discovered after her first child was born that she was HIV positive. Because of her child’s ill health. The child was tested which led to her discovery.

She got onto the appropriate drugs (which take their toll in side affects) and her second child was born.

HIV free.

There is so much hope. The drugs help many.

Mengo Hospital Canada’s fundraising efforts continue for a food supplement for the children and adults. Epap (manufactured in South Africa) contains many of the essential vitamins and minerals missing in the otherwise starchy Ugandan diet.

You see, once a child or adult begins taking drugs for the treatment of HIV. They are on them for life.

But if their CD4 count (a measurement stick so to speak of the ravages of the disease) stays at a level where the drugs aren’t required. The easier it is for them to live with the disease.

Dr. Sparling whom I volunteered with at the clinic studied the nutritional benefits of treating HIV positive patients, not yet on the Antiretroviral drugs. The results were positive.

I also helped count pills in the pharmacy while at the AIDS Clinic. The longer an HIV patient can go without having to take piles if pills, the better their life will be.

If extra nutritional supplements can help, here’s a way we can help support those living with the disease.

HIV/AIDS is the Cancer of Africa.

Consider making a donation to Mengo Hospital Canada in support of ePap. 

Uganda Wishes – Lab Speak

Doesn’t bother me the sight of a needle and getting blood withdrawn. So I was ok to help out in the Lab at the AIDS clinic at Mengo Hospital. Christopher is in charge. I helped him write down patient files and transfer information from one place to another. I was told it was a slow day. He handled it with ease.

I recall getting blood not long before I left Canada. In Canada we have a fancy seat with flat arm rests. One for each arm. At Mengo there is a plastic outdoor garden chair.

Patients are asked to roll up a sleeve. Then for the turn-key a latex plastic glove is wrapped around the arm. The disinfectant comes from a bottle without a spout that he has to tip upside down. There’s a waste box separate to other waste for the needles.

HIV tests are done on the spot. Of the ten that day, seven were positive. One a teenage boy.

I asked Christopher if the numbers are decreasing.
“HIV is quite expensive,” he said. Adding, he didn’t feel things were improving very fast. Because those infected often fail to tell their partners and go out and taint others.

This made me sad. I had hoped differently.

So I asked him what his wish was for Uganda.

“To have a better life without HIV.”

He had to take some sputum samples from TB patients. Many with HIV also become infected with TB.

Then Marisa came for her blood test. Her mother went first. When an HIV person is diagnosed their CD4 levels are monitored. Marisa started screaming even before the needle came out. She’s three and a half years old. I took her baby brother in my arms and tried to take her mind off things with the only doll like object in the room. Not a chance. After a patient five minutes of screams the blood came out. Didn’t make her happy. Up came all the papaya she’d eaten before she’d arrived.

I told her she was a brave girl.

I asked Christopher another question. This one his wish for the world. He responded with really? You want to know?

Yes, yes I said.

“We need a peaceful life. Without fear of terror,” he said. “Wars have caused a lot of problem. What we put up today, is destroyed tomorrow. We keep on regressing.”

So true I thought. So true.

Yet on this day there was hope. The HIV patients that come to the clinic have it. They have the medication.

Here at Mengo, while they wait for their appointments a nurse speaks with a white board. There is education. The spread of knowledge. To pass on.

It’s a good thing there is an AIDS clinic at Mengo Hospital.

It’s a good thing the people come. 169 by 2 p.m. today.
Who knows how many more tomorrow…

What Some Say

One mode of transportation to the AIDS Clinic

Got a chuckle tonight sitting down in Maggies bar with an administrator for Mengo Hospital. We were talking about the state of the roads in Kampala. Referring to the onslaught of potholes. His story was a knee slapper. 

He pointed his hand in one direction attempting to describe the location. Then he stated its claim to fame.

“The pothole is so big it has fish in it!” he said adding, “There is no shame.”

Made me think. I saw a word today that triggered the right association for me around the dogma associated with HIV/AIDS. That word was stigma.

According to Dr. Watiti Stephan’s book, HIV/AIDS 100 Commonly Asked Questions, “Stigma is the fuel that spreads HIV and makes it so difficult to fight it.”

Nowadays, we know more. In Africa it is understood by many that HIV/AIDS is preventable. Also, that it’s incurable. And now that it is manageable. Providing the patient has access.

Here’s how. Antiretroviral drugs or ARV's for short.

But the test has to come first. Whether they’re feeling well or not. To know your HIV status is to know your CD4 count.

Both women I worked with today at the Mengo Hospital AIDS clinic were HIV positive. Both enrolled in the ARV's program. As one put it. Once you start on the drugs. You’re on them for life.

However, there’s some hope in prolonging the start of the prescription. Something Friends of Mengo have funded and continue to research the benefits. First there was a selenium study. Then a nutritional supplement study with a product known as e'Pap (produced in South Africa).

I asked one of the women what e'Pap meant to her.

“It’s an immune booster,” she said. Adding, “You have to qualify to receive it.”

Depending on the CD4 count. When the CD4 count goes below a certain number, ARV treatment is required. However, some patients have delayed the consumption of ARV's (there are many known side-effects) by as much as a year by taking the e'Pap. Essentially a composition of maze, soya and 28 different minerals and vitamins proven to boost the immune system and provide more nutrition then what’s available in the consumption of their daily food .

Many HIV/AIDS patients can also succumb to TB. In addition to their drug treatment at Mengo Hospital, they also receive e'Pap.

We’d reached 146 in the weigh-ins already today. Part of this morning’s job for me. Helping to record the patients weight in their files. It wasn’t yet noon.

Many of the patients waiting in the clinic were here to re-fill their drug prescriptions. Some for CD4 blood tests. Others for cervical cancer screenings. Still others for a doctor’s assistance.

While they waited a nurse stood up with a white board educating them on this and that.

A young girl ran around with her shoes off. Playfully chewing on a cob of corn. Her mother sitting down and cradling an infant.

Who else qualifies for e'Pap I asked?
“Normally young kids like that,” she said pointing to that young girl. Because they are growing. And not yet on the ARV's.”

Many HIV positive at birth.

Later in the day I conferred with "Dr. Jim" He gave me a copy of the study Nutritional Supplements Can Delay the Progression of AIDS in HIV-Infected Patients: Results from a Double-Blinded, Clinical Trial at Mengo Hospital, Kampala, Uganda.

It’s what some may say. There is no cure for HIV/AIDS. But there is hope in prolonging the life of this generation. 

mengo hospital

Kisakye Anne Nazziwa at Mengo Hospital's AIDS Clinic

A week ago I was in the comforts of my own home. Contemplating my journey to Uganda. Now I am on African time.

Each day a new experience.

Twice now I have assisted at the AIDS clinic at Mengo Hospital. In triage. Intake. Today was children’s day. Not as busy as most. 

But everyday there is a need. The clinic generally sees between 150 to 200 patients a day. And it doesn’t stop I am told. Many line up as early as 6 a.m. to get their number before it opens an hour and a half later.

They come from afar. For medicine. For support. For treatment. Education. For the children - some love.

My job this morning was to weigh in the children and measure their height.

I was working with Kisakye Anne Nazziwa. Also HIV positive. A beautiful woman with very good English. She works everyday at the clinic. Everyday she is well that is. I asked her if she was married with children.

She told me because of ignorance, she found herself to be HIV positive in 1994. She’s been on the anti-viral drugs since 2005. Because of her diagnosis she said, she has chosen not to reproduce or get married. I asked her what her wish was for the Ugandan people today.

“My wish for the Ugandan people is to be. To have peace. To stop the war,” she said.

“If there is peace there is no sickness. The sickness will stop. When people are settled.”

Then I asked her what her wish was for the world.

She said, “To be civilized. To be educated. But without civilization you can’t put education to action.”

Then she asked me if I knew why people get HIV?

“Because,” she said, “Of lacking this civilization. They have not been counseled by how the virus attacks.”

Mid-way through the morning I was asked to take tea. As I walked to the lunchroom a young boy I’d met at the Saturday Club came running over to me and took my arm. I learned his name is David. Also HIV positive. Here for his medicine.

David followed me to the lunchroom where the staff offered me a banana and some kasana. It’s a root of some sort that looks like chicken but tastes almost like a French fry.

David sat down and ate too.

When I returned to help Anne we had an eighteen year-old mother, HIV positive with her infant to weigh in.

As she walked away I turned to Anne and asked her one final question.
“Do you have a dream?” I said.

“If I am well, I want to continue to assist people,” she replied. 
She told me she'd taken counseling courses and wanted to help also with counseling.

The medicine she said, is so we can produce a new generation. To get a free generation from HIV. We are fighting. We are in a struggle she adds.
"Don't cross-infect. But produce for the next generation," she states.

Here we have one person helping. The kind of help that spreads.
When one person helps, it helps the community. It helps the world.  

Uganda Wishes - The Saturday Club

Wasn’t sure what to expect when I walked towards the AIDS clinic at Mengo Hospital for the Saturday Club. I had heard up to eighty HIV positive children, mostly orphans, attend monthly. Usually the third week in the month. They’d changed the drop in this month for the Friends of Mengo Canada visit. We were bringing finger paints and home-made t-shirts from St. Michaels University School students in Victoria (British Columbia).
Outside the entrance we were greeted by some of the staff heating up what looked like milk in a huge pot over an outdoor fire-pit. As I followed them through the clinic we came upon a communal outdoor compound. I didn’t see a whole lot of smiling faces. It seemed the children sat to one side while the caregivers on the other. It wasn’t till much later that I realized most of them were grandparents.
The morning gathering began with song and prayer. Then the children lined up for some hand painting. One young boy kept coming up to me and touching my arms. I wondered if I was the first white person he’d seen and whether he was trying to understand why my skin looked so different to his.

The Saturday Club lines up for hand painting

Dr. Jim Sparling with Monica (11 years-old) HIV positive

Dr. Jim Sparling, Executive Director of the Board of Directors for Friends of Mengo Canada (also from Victoria) and I sat down to interview some of the children and their caregivers. He’s known as "Dr. Jim" at Mengo Hospital. But first he told me about Monica, now 11 years old. Diagnosed HIV positive, she’d made leaps of progress over the four years he’d visited. She had begun anti-viral treatment. Monica would later recite us a poem she wrote (see below). Then she would sing it. (I plan to have it posted to You Tube when I have access to sufficient band width).

Prevention of Mother to Child Transmission (PMCT) was not something known to me. HIV/AIDS was. We spoke to Alice. She has three children aged ten, seven and two. Grace, her middle child suffered from frequent infections with attacks of Malaria and chronic coughs. She worried about her. Two years ago during her third pregnancy, Alice came to Mengo Hospital and was tested and found to be HIV positive. For Grace’s pregnancy she had attended a community clinic and had not been tested.

She was enrolled in the PMCT program at Mengo Hospital and given anti-viral medication. Her youngest child was born negative and has so far remained HIV negative.

After the delivery she brought Grace to Mengo Hospital to have her tested. She is HIV positive. Grace started anti-viral treatment and her health has since improved. She has fewer infections and she’s gained some weight.

I asked Alice what her wish was for the Ugandan people today and what she wished for the world.

Alice’s wish for the Ugandan people is that the children, as she put it “who are clever in the head will get the education.” Many can’t continue, she said, because of finances.

Her wish for the world was that there be an end to HIV/AIDS. The children born today, she said are innocent.

The morning progressed with playtime, then meal time. Most of the children were then gathered to receive the home-made t-shirts from the St. Michaels University School students and to pose for a group photograph.

It was such a motivating morning to learn about PMCT and to hear first hand how one innocent child had been spared by the ravages of HIV/AIDS.

That’s hope for the children in Africa. 

Our Ugandans

by Nakanwagi Monica, 11 years old
HIV Positive

Ugandans Ugandans Ugandans

It’s an erosion

The disease is very painful

Aids you are merciless

Children children

We need our rights

Medical care is our rights

Love and care

Our mothers are widows

Our fathers are widowers

Children we are orphans

They are parents

Go for PMCT (Prevention of Mother to Child Transmission)

We need babies

Born free from violence

Leaders take a step

Obstain obstain

Obstain is our uphill.