Jackie - Living with HIV for 4 Years

 Jackie has been living with HIV for 4 years. After getting tested as a routine precautionary measure, Jackie’s positive result came as a giant shock.  She was so afraid of others finding out and how they would look at her once they knew, that she, for a brief period, found life not worth living.  

She gathered her courage and called her family together to give them what, at the time, felt like devastating news.  And although her family was caught off-guard, they responded with love and support.  Soon after, she began to gradually tell friends and colleagues and was once again overjoyed by their warmth and support.  Jackie remained open and honest about the new challenge in her life and those close to her became closer. 

 

After her diagnosis Jackie began taking ARVs and has been generally healthy.  There are, however, several unpleasant side effects from the medication such as dizziness, loss of balance, insomnia, nightmares, headaches, and trouble concentrating.  Jackie manages the side effects and continues to lead a full life enjoying golf, traveling, and photography.

 

Not long after her diagnosis, Jackie got married to a man who is also HIV positive.  They support each other through the challenges of their illness but enjoy their daily lives to the fullest regularly surrounded by their children, grandson, dogs, family and friends. Jackie and her husband speak to schools, churches, and companies, with whom they share their story and personal experiences about being HIV positive.  It is their goal to raise awareness, reduce stigma, and change the perceptions associated with HIV/AIDS.  

 

Jackie changed jobs within the last few years and was transparent about her status.  She began her job with her boss fully aware of her status and without the secrecy and shame that can often follow new employment.  Jackie is open about her status in all areas of her life. Her husband, however, remains selective and discrete with whom he discloses his status.  Jackie supports his decision and recognizes that although being open was the best way for her it is not the best route for everyone.  

 

Jackie is a happily married, career woman, mother of 3 beautiful children, and granny to an amazing little boy.  She has not allowed HIV to define her.  She has met the struggles head on and with the her positive attitude and the love and support of her husband, family, friends, and work colleagues she is planning for and looking forward to the future.  

 

“It ‘s not something that happens to other people anymore, it can happen to anyone of us.  It does not discriminate between color, culture, religion, gender, or age.  I want to share my story to make people aware.  Take every precautionary measure possible and get tested on a regular basis.  It’s been a hard lesson, no mistake, but life does go on, even with its challenges.”

Shawn - Living with HIV for 19 Years

Shawn discovered his status at the young age of 17 and has been living with HIV for 19 years.  He was abandoned by his mother at birth and forced to leave the home of his adoptive parents at the age of 15 because they could not come to terms with Shawn being gay.

After leaving home at the age of 15, Shawn was forced to live on the street for periods of time and turned to a life of prostitution.  After discovering his positive status at age 17, Shawn decided to use his illness as motivation to find a new direction in life rather than as a reason to give up.

Despite the challenges, Shawn became a successful DJ and played clubs and events throughout South Africa.  Over the past 19 years he has had three long-term relationships with negative partners and has found that being open about his status from day-one has allowed him to have fulfilling relationships with no secrets.

Seven years ago Shawn met his life partner, Georg.  Georg has spent much of his time collecting and caring for exotic birds on his extensive property.  He is proud to say that he is the only individual in the world to own all eight species of swans.  In September of 2013, they pooled their talents and passions to create a wedding venue on the grounds of Georg's magnificent bird collection and Heaven's Gate Event Venue was opened.  It has been a success by all measures and Shawn does the bulk of the wedding/event planning, as well as being the DJ.

Shawn has been blessed with a strong immune system and has never been sick as it relates to HIV.  However, he struggled with the stigma of ARVs and spent 14 years of his positive life without them.  With the help and encouragement of Georg, Shawn was finally able to move past the stigma of being on ARVs and began taking them about 5 years ago. 

Shawn does not allow his HIV status to define who he is.  He owns and runs a successful business, is in a happy and fulfilling relationship with his negative life partner, Georg, and lives happily with Georg and their five Scottie dogs.  He is currently up for Positive Hero of 2015 through the "Change the Stigma Project: and is actively involved with an HIV charity called Nkosi Haven.  Shawn is proud to be positive!

"I'm glad I am HIV positive, becoming positive game me the motivation I needed to change the course of my life in a positive and healthy way."

 

Patty - Living with HIV for 2 Years

Patty has been living with the knowledge of her positive HIV status for 2 years. She discovered her status while being hospitalized for a sudden respiratory illness.  After a long recovery process Patty has been strong and healthy while on ARVs.

Patty is the widowed mother of six children and grandmother of three.  Patty lives with her eldest daughter, Stephanie, who has been her greatest support and her only child who is aware of her status.  Patty would like to tell her other children but is hesitant because of the social stigma within their community.  While Patty may be ready, she remains sensitive to whether or not they are ready. 

Since her positive test result, Patty has been diligent about caring for her health and taking her ARVs but with that comes complicated social challenges.  At her local clinic she is required to use a healthcare card that clearly identifies her HIV status.  The card of a patient who is not HIV+ is small and white while the card given to those who are HIV+ is large and green. Patty feels that when she presents her large green card at the clinic waiting room her HIV status is easily identifiable.  This, often times, discloses her status without her even knowing.

Patty has been a constant advocate for HIV privacy and stigma reduction within her community's healthcare system.  She has succeeded in getting her clinic to no longer separate the HIV+ patients from others in the waiting room.  Her current battle is to convince the clinic to adopt uniform health cards to protect patients' privacy.  In addition, Patty is actively running and participating in several online HIV support groups and has also recently started one within her own community.

Patty was recently let go from her job and is confident that it was due to her positive status.  Being unemployed wasn't an option so she borrowed money from a friend to buy an industrial sewing machine and has put her seamstress talents to use to support her family.  

"I am just a normal, poor, old woman trying to help the HIV community online and at home.  I am vulnerable and scared, but am putting up a brave front."

Mandla - Living with HIV for 18 Years

Mandla has been living with HIV for 18 years and is the father of a healthy HIV positive 12 year-old boy.  He has been on ARVs for 9 years and has remained healthy throughout the years.  However, over time he has experienced a loss of roundness in his face and slight nerve damage in his feet due to the side effects of some of the now antiquated ARVs.

Mandla lives a life of purpose as an involved parent and a valued community member performing outreach to others affected by HIV.  Mandla has not been limited by HIV in the most valued aspects of his life, especially finding love.  Mandla met Anna (see her + story below) through one of the many online support networks for people living with HIV.  They will be getting married in the near future and are looking forward to a long life together.

 Mandla has devoted many years to HIV advocacy, working to improve awareness and fight stigma.  He works with his local government and is a featured speaker on HIV awareness - most recently on one of Durban's largest radio stations, Ukhozi FM.  His drive to advocate for the infected can be in part attributed to his love for his son.

Mandla discovered his son's status when he became ill at the age of 3.  After being placed on a treatment regimen he regained his health and has continued to maintain it.  Unfortunately, Mandla's son lost his mother to AIDS when he was only 4 years old.  At the age of 10, Mandla's son's status was disclosed to him with the help of social workers and a children's support group.

Mandla believes that years of hard work and outreach within his community has made an impact that is absent in many other rural areas of South Africa.  People are more knowledgeable, open, and accepting, which makes life easier for his own son in an environment that was once the opposite.

"It is upon us to be role models, especially to the newly infected."

 

Anna - Living with HIV for 12 years

Anna has been living with the knowledge of her positive status for 12 years now.  Shortly after learning about her own illness, Anna watched her sister die of AIDS due to denial and a lack of knowledge about the disease.  Her sister left behind two daughters, aged 7 and 11, for Anna to raise.   

 

Anna works as a receptionist at a doctor's office and has been employed in this field for the past 14 years. For over a decade she has supported herself and her nieces with the oldest now in college.  

Anna volunteers much of her free time identifying individuals within her community's informal settlements who are ignoring and losing the battle to stay healthy with HIV.  As an advocate for the sick to seek care, she has influenced the lives of many to choose life with treatment rather than the path her sister chose.

Anna has not allowed her positive status to keep her from finding love.  Through one of the many on-line networks and support groups for those living with HIV, she found Mandla.

 

Anna and Mandla are engaged to be married and planning their wedding for the near future.  Anna is healthy and has never allowed her status to keep her from living a full and meaningful life.

"Being open about HIV has allowed me to be a positive example for so many and I can only hope more people will do the same."

Rinah - Living with HIV for 5 Years

Rinah is the mother of two children (ages 19 & 9) and has been living with HIV for five years.  After she received her positive result, unexpected health complications quickly followed and it remains unclear whether they were related to HIV.  Once her immediate health concerns were under control it was time for her to decide how to move forward. 
 

Before Rinah had an opportunity to disclose her status to family, a rumor within the community reached her son and daughter.   Devastated, they attempted to end their lives.  Thankfully, Rinah intervened in time and sought medical attention, which saved their lives.  It was at this point Rinah realized she had no choice but to live for her children.

 

In addition to her children's struggle, Rinah was fired from her job at the public health clinic and firmly believes it was directly related to her status.  She is currently working to fight her discriminate dismissal. 

 

While unemployed, Rinah volunteers with both Treatment Action Campaign (TAC) and a community group called Takuana Neshome, which means, "Stand Up and Do Something For Yourself". 

 

 Takuana Neshome meets daily to collect a list from the health clinic of those who test positive and never return for treatment.  List in hand, volunteers go door to door to provide in-home care, food, support and encouragement to choose life with treatment.  

Rinah’s strength and optimism have made her an HIV activist and leader within her community.  She lives without shame and her children have grown to be accepting, and supportive.  Her son has even taken it upon himself to volunteer and work as an activist within the community as well.  Rinah has fought through the initial hardship and is working daily to improve her life and the lives of others affected by HIV. 

"In the beginning, I had no choice but to be strong for my children and now we are able to be strong for each other and our community."

Gary Allpass – Living with HIV for 23 Years

Gary Allpass has been living with HIV for 23 years.  His day-to-day life hasn’t been without its challenges including near death health complications, on more than one occasion, experiencing severe side effects to several ARVs, and being fired from a job due to his status.   However, Gary is a fighter and has used his illness to make him a stronger person.  He fought his discriminate work dismissal and ultimately became an integral part of the reason it is illegal today, for anyone in South Africa, to fire someone for being HIV+.  

 

Gary has also pursued his personal passions with vigor.  He has been involved with horses since he was a child, growing up on a farm in KZN, and has made a life and a career out of his love for horses and riding.

 

Gary has competed at very high levels of dressage, and for a living, also trains others to work their way up the competitive ranks. 

Despite some of the unfortunate side effects from the ARVs, such as some paralysis in his feet, Gary continues to teach, ride, and compete.  

  The paralysis in Gary’s feet qualify him as having a disability and have allowed Gary the opportunity to compete in the Para-Dressage arena.  He has previously represented South Africa in competition and also won the South African Para-Dressage title in 2010 and 2011.

Gary was unable to put the funding together for the London Paralympic games in 2012, however he has made it his goal to get to Rio in 2016.  He is currently working hard to find funding and is beginning the qualifying process in a couple weeks.

  “Being HIV+ has turned me into the strong and determined person I am today.”