Facebook Pixel Code
About Sickkids
About SickKids

Patient and parent perspectives

The HIV Comprehensive Care Program at SickKids sees around 70 to 80 patients a year.  In celebration of the 25th anniversary of the program and all the progress that has been made, patients and families have shared their thoughts and experiences about living with HIV.

While the medical management of HIV has come a long way, the stigma of the disease still exists.  

Male graduate of the HIV Comprehensive Care program at SickKids in his mid-twenties
As a teenager, it’s very nerve-wracking trying to figure out who you can confide in. I was very lucky that all of my friends, and the people I have opened up to about HIV have been gracious and accepting of me. Even when I had to tell my first girlfriend, I was scared because I didn’t know how she would react. Basically, all the normal things that teenagers have to deal with get a little bit more complicated when you’re HIV-positive. Making and trusting new friends, forming relationships, taking care of your health, sticking to a good routine – in my case taking my medication every day.  

I’ve been going to SickKids ever since I was a baby and the medical team always stressed how important it was for me to take my medication every day. Sometimes I felt that they were being dramatic. I think many teens go through that phase where you just don’t want to take your medicine. I’ve lived my life trying to make sure that HIV does not define me, and the one reminder every day was my medicine. Now, it’s easy. It’s part of my routine and I’m thinking more about my future. I want to be healthy and want to stay healthy for myself and for others.

When I was at SickKids, I really valued the teen support group so now as an adult I’ve been helping out with a youth support group in my community. I’ve been very fortunate to have a lot of family support, but that isn’t the case for everyone. Many teens in the group don’t have support from friends or other family members, they’ve never had a relationship and don’t know who to talk to. Our group provides workshops, education and a safe community where they know they will be accepted.  I always say that I don’t let HIV define me, but that doesn’t happen overnight; these teens need that support and confidence so they can live a good life and do what they love.

HIV is still very stigmatized today. People don’t recognize it as something that affects people in Canada, the GTA or Toronto, or something that exists in 2013, but it does. We are healthy people, but we are still dealing with a disease every single day. It’s so important for the public to be educated and informed about HIV and have an accepting and open mind to those who have it. Because the stigma still exists, I can understand why HIV-positive people continue to be afraid to open up to others.

Back to top

Mother, graduate of the HIV Comprehensive Care Program at SickKids, in her 40s
I was diagnosed with HIV when I was 15 years old. I was in high school, and we’d all been hearing about this disease and that many people were dying. When I found out that I had it, I was terrified. There was no cure or treatment at the time, so naturally, I thought I was going to die. I was so scared and confused. At 15 years old life is confusing enough, right?

Going to the HIV program at SickKids helped with the confusion, I remember Dr. Read and Cheryl telling me that this was serious and very important, but they didn’t make me feel like something was really wrong. They were so warm and so caring.

I tried to live like it wasn’t happening. Some people knew I was HIV-positive but I didn’t admit it to anyone. And no one asked me directly. I started to get sick; it felt like I was catching everything little thing. It was like a fog, I just got used to not feeling like myself.

I was on a variety of medications before the combination antiretroviral treatment was available. When I started it, my life changed. I had the feeling of blood returning to my face and it was amazing, I felt normal again.
Because I always thought I was going to die, I tried to convince myself that I didn’t want children. It was easier to face that way. But you only live once, so of course I wanted to have every possible experience I could.

Today, I am the proud mother of a healthy little girl. I returned to SickKids as a parent with my daughter who was born uninfected; she is under the care of the same clinical team who cared for me as a teenager. I have come full circle.  

Back to top

Current female teen patient in HIV Comprehensive Care Program at SickKids
When I first was told that I was HIV-positive I didn’t quite know what to think. As I got older and learned more, I had questions like, ‘will I be able to grow up?’ and ‘will I be able to have children?’ Being part of the teen support group at SickKids has been so amazing though. We talk about school, relationships and our health. I like the fact that I’m able to go there, and be accepted no matter what. We’re all there for the same reasons and it’s comforting to know that I’m not alone. I’ve made so many friendships and when we’re not in touch at SickKids, we talk through social media.

I love singing and acting so I’m hoping to go to college or university for theatre after high school.

Back to top

Adoptive mother of seven-year-old girl with HIV at SickKids #1
When we were asked to participate in HIV research at SickKids, we were excited with the possibility of a cure, and what that could mean for my daughter and others like her. A cure would be amazing but if it doesn't happen yet, my daughter is an incredibly happy and healthy little girl, and I don’t see why being HIV positive should ever change that. I see a bright, bright future for her.

Back to top

Adoptive mother of seven-year-old girl with HIV #2
Since our daughter has been on the same medications since the day she was born, we were told that she was a candidate for research that is looking into a cure for HIV. A cure would be wonderful, but even just knowing that people are working towards it and trying to find new options is fabulous. If this doesn’t help my daughter, I hope that one day it will lead to a cure for other children and families living with HIV.

Back to top