IRMA Member Proscovia Ayoo - Her mission is to bandage the wounds of HIV victims

via The New Vision (Uganda)

Proscovia Ayoo is a hero, not only to her family but to her community as well. Being ostracised because she is HIV-positive did not prevent her from joining the battle against the scourge. Samuel Senkaba brings you her struggles, fears and triumphs

BEFORE Prosscovia Ayoo took an HIV test, she could not imagine living with HIV. That all changed in December 1997, when she took a test and turned out to be HIV-positive. Ayoo felt like she had been handed a death sentence. “I wanted to commit suicide to spare my family from worrying about my health. However, because of the psychological pain involved, I abandoned the suicide mission.”

Today, she is singing a new song. “I’m glad for the gift of life, HIV is now part of me and life is still beautiful nonetheless.”

Read the rest of this article.

Read "I am called Ayoo Proscovia" on the IRMA blog.

Read her bio on the IRMA website.

I am called Ayoo Proscovia - Final Installment!

The following is a first person story written by IRMA advocate Ayoo Proscovia. Click here to check out her Friendly Rectal Microbicide Advocate bio.

This is the final of 4 installments.

Read the previous installments here.

PERSONAL BENEFITS OF BEING OPEN ABOUT MY STATUS.

Openness helped me get lots of friends and lots of support especially in the form of treatment; I had no home/house but now have been able to acquire some pieces of land where I've built a small house for myself and the children, I am no longer scared of HIV and especially the stigma associated to it, I have also been able to support many highly learned /professionals go for HIV tests and live positively and many who qualify -adhere to ARVs. Through my support I was able to counsel them and also refer them for HIV services.

In 2006, the Ministry of Education through the Grant given to World Vision was able to use me to give testimonies to about 500 College lecturers so as to encourage them to take HIV tests and access services. There was a good response and turn up and many are now benefiting from AIDS Services.

As part of the benefits of being open, I have been selected as the District representative for people living with HIV/AIDS at the Uganda AIDS Commission National conferences that take place every year in Uganda.

I also attended the recent Microbicides 2008 Conference in New Delhi -India 23rd-27th February 2008. Something am very proud of and look forward to several other such opportunities to come my way.

After the 11th International conference at Kampala 2003, we were able to form the National Forum for People with HIV/AIDS Networks in Uganda(NAFOPHANU) where I am now one of the District co-ordinators and my network is called Tororo Forum for People Living with HIV/AIDS Networks(TOFPHANET) with committee members who are HIV positive themselves, we have young positives with us, that is, the children who are HIV positive (below 18 years) and some are taking ARVs too. Some are as young as 6,8, 11 or 14 years old.

I urge Uganda Human rights to look into my case for support and to be listened to.

CDC was taking my CD4 cell counts every 3 months since 1st September 2003 till January 2007 where I had between 62 in 2003 and about 358 in December 2007.

What interests me most is that when I got the opportunity to fly to India for the Microbicides conference, I had a high jump on the increase of my CD4.

My most recent result is 508(July 2008)

MY BELIEF IS THAT: 'There is no conceivable situation in which it is not safe to trust in God'. St Augustine wrote: "TRUST THE PAST TO THE MERCY OF GOD, THE PRESENT TO HIS LOVE, AND THE FUTURE TO HIS PROVIDENCE".

PRAYER FOR US ALL
O God, I never waken up to find myself forsaken- to find you are not present. To find your power diminished; To find your wisdom at an end; To find your patience with me exhausted; Again and again I fail you in behaving foolishly- Forgive me and let me try again; Refresh me and renew my old eagerness. I thank you with all my heart- for pleasures and surprises that keep on coming; Stimulating problems to solve; Loyal friends to support me. What I ask for myself today, I ask for them too, O GOD. AMEN

I am AYOO PROSCOVIA

In October 2007, a friend, a fellow positive here in Uganda gave me a paper with instructions and information about the Microbicides conference/abstract writing and scholarship offers for India. Since I am working with people living with HIV/AIDS as my own initiative on voluntary basis, and being HIV positive myself, I decided to apply for a scholarship and wrote an abstract entitled 'ACCEPTABILITY OF THE USE OF MICROBICIDES AMONG CLIENTS IN RURAL SETTING IN SOROTI -UGANDA'.

I noted that with the advent of Anti-Retroviral Therapy and the subsequent improvement it brought to the quality of life of those enrolled in the treatment programs has ushered PHAs into a new era of life where they can live longer and better lives. With improved health, PHAs have regained the strength and desire to resume and pursue aspirations such as sexual activity and getting partners.

The demands arising from these aspirations coupled with the needs to the need to adhere to treatment and sustain preventive behaviour, have resulted in challenges that require appropriate strategies to empower PHAs to cope and here Microicides shall be well accepted because maintaining safer sexual behavior is a challenge as evidenced by the unsafe sexual behaviour and occurrences of STIs.

One of our principle task in the advocacy for Microbicides is to promote sexual self-determination in the cultural frame-work of the Tororo Forum for people living with HIV/AIDS.

Women face more problems when HIV becomes a part of their lives.We encourage them to know their rights and recognize their risks. For one woman, the risks may be domestic violence, for the another poverty, low self-esteem, sexual abuse/assault or alcohol dependence.

Apart from the physiological factors like the large surface area of the vagina, the prolonged contact with sexual fluids and the fact that sexually transmitted infections do not easily show, there are social factors like the inability to negotiate for safer sex, poverty and subordinating compulsory marriages, rape and defilement, dry or forced sex and genital mutilation which expose women to infection.

When we started noting how much more vulnerable young women were to HIV, both for biological reasons and because men are the ones who generally make the ultimate decisions regarding condom use, we thought giving women including those in marriages that may not be monogamous a tool to protect themselves against HIV, without having to have complicit agreement from their partner could drastically impact the rate of HIV infection in our rural communities.

We haven't seen the drugs yet, but continue to advocate for it in Soroti and Uganda as a whole.

At the conference in India, I moved around the booths and came across the Advocacy Networking Guide which enabled me to visit International Rectal Microbicides Advocates in the Advocates Corner and Family Health International were I met Sarah V Harlan and another colleague. They interviewed me and recorded my voice as I narrated my story and testimony of how I have lived with the virus for over 10 years and how much stigma and discrimination I have faced from members of my family, communities and how I lost my job as Headmistress in a school in Tororo district in Uganda.

I signed in their books and have since been in constant communication with them.

I feel great and lucky to be associated with IRMA/Microbicide Trials Network` and always want to continue being in touch with them for the counseling support they provide for me-the same of which I also transfer to my peers in the community where I live.

[Editor's note - Thank you sooooooo much, Ayoo Proscovia, for your wonderful story! It is so inspiring ---- keep up your fantastic work and continue to stay healthy and strong! We hope to see you soon...]

I am called Ayoo Proscovia [part three/four]

The following is a first person story written by IRMA advocate Ayoo Proscovia. Click here to check out her Friendly Rectal Microbicide Advocate bio.

This is the third of 4 installments. Read the previous installments here.

STIGMA 1: One morning as I was about to reach the school, a teacher rang me and told me that my office had been locked by a different and bigger padlock and that danger was looming, so he warned me not to go to the school.

So, with fear I also went back and immediately went to report the matter to the DEO. The DEO simply told me to go back home and sit since they knew my problem. No further explanation was made, no letter, no regrets and no apology from whosoever was made till today.

I have sat at home with no school to teach in - and yet with the decentralization system of governance in our country, I cannot cross over to any other district so as to be employed. With the harsh conditions I went through/lived in,- traveling long distances to and fro the school, doing without meals/lunches, under the hot sun and sometimes under rain, having been locked out of my office and actually having been chased away from my job, I was faced with what was more than STRESS.........

Within 2 weeks I broke down with severe malaria and was admitted in hospital with several bottles of drip as part of treatment. But the openness and friendship I had involved myself in provided the support I needed.

ARVs were not yet in the district, but through phone calls, I was put on ARVs by CDC Tororo immediately-having taken CD4 cell count with result of 62. I took my ARVs religiously ,but after 1 year I started getting reactions- where I could vomit 6-7 times in a day until I was changed to 2nd line regimen which I am on till now.

In October 2003, I attended the 11th International conference for people living with HIV/AIDS that was held in Uganda, I presented my case of stigma and workplace discrimination against me and human rights took it up, but up to now nothing has been done to support me.

STIGMA 2: From the closest members of my family (My father and mother/sisters and brothers). When I failed in the 1st line of treatment, I broke down completely and almost died. I was admitted in hospital under the care of the doctors from CDC and TASO for 2 weeks. I lost senses and almost ran mad or something of the sort - I was put on drug holiday for those weeks. As I was lying in hospital, my own father thought I was to die. He removed all my little savings/cash from my account after removing my ATM card from my little children.

Meanwhile at home, my mother carried away most of the valuables like; my dear clothes, shoes, traditional wears and other household assets. My father and eldest sister who is a nurse in one big hospital in the country bought a coffin ready for my burial, but I failed to die, they removed my will, read it and in it I had written that because of the way I was chased away when my husband died, I wanted to be buried at my new (OWN) homeland, my father wanted to disrespect my wish, so he arranged with my former in-laws that they may receive my body back in the other village and that I should be buried near my husband so that my father would sell away my own pieces of land in town. I did not die and I don't know what they did with their coffin.

'PRAISE THE LIVING GOD'

POSITIVE LIVING I have managed myself in this situation through this period of time by basically practicing positive living which include things like; accepting my status and situation, having hope, seeking continuous counseling ,eating balanced diet, drinking plenty of clean safe water, eating plenty of fruits, seeking prompt medical support, sharing my HIV status with others for support, avoiding self medication, doing enough exercises, taking septrim on a daily basis, avoiding stress whenever I can, praying to God for longer life so that I can see my children graduate in future, continue with normal activities, continuing to plan for my family and taking my ARVs religiously/observing adherence.

Read the fourth, and final, installment of "I am called Ayoo Proscovia"
on Friday, August 15.

I am called Ayoo Proscovia [part two/four]

The following is a first person story written by
IRMA advocate Ayoo Proscovia.
Click here to check out her Friendly Rectal Microbicide Advocate bio.

This is the second of 4 installments. Read the first one here.

In 1999 I joined Friends of TASO and as I became very familiar with the services provided by TASO and maybe the only teacher of my level of Education. I chose to go public about my HIV status.

In the school where I was the Headmistress, I used to talk a lot about HIV and in staff meetings I would encourage teachers to take the HIV test so as to know their status.

I went to the local FM Radio stations in my district and shared my status with the general public without any fear because I felt I needed to help others come out openly so as to get more AIDS support services. In 1999, I was elected as a member of TASO Tororo Centre Advisory committee (CAC). In 2002, I was elected the Vice Chairperson of CAC.

In December of the same year, I was elected the National Treasurer for the National Community of Women Living With HIV/AIDS in Uganda (NACWOLA). I continued growing to higher heights in openness about my status.

In August 1999, my husband died. There was a lot of struggle by my brothers-in-law to inherit me, but I refused having known my status. This annoyed them very much and I was immediately sent away from the home without anything at all, not even my own clothes or even beddings for the children. I carried not a single cup nor saucepan, plate or blanket. I went to some town suburb and started by renting in someone's kitchen at Uganda shs 10,000 per month sleeping under soot and with a lot of stress. I used to cry a lot. I grew very thin and weak as i was left helpless.

I was however able to continue with life by the support of TASO. They looked at me with a lot of respect and provided me with the support I needed .I gained strength, worked very hard and dedicated most of my time to HIV/AIDS activities.

However in 2002, the District Education Officer (D.E.O) transferred me to a school very far away from my new home. The school was about 18 kilometres away and I would commute. I would never be in school in time because I had to change vehicles at least 3 times before I could get there. I would never be in time to address school assemblies and I would also panic to leave the school early so as to get back home to open the door for my children who were also going to school in a different place. I used up all my monthly salaries on daily transport and by the end of the month I almost had nothing to spare. I believe this transfer to this far away school was done to fail me in my work since they knew I was HIV positive.

In 2003, the chairman of the school management committee lost his wife to HIV/AIDS and I intensified my talk and sensitization on HIV/AIDS and I think this man thought I was about to catch up with him. He was in total denial and had stayed pretending for long, but very sick.

Read the next installment of "I am called Ayoo Proscovia"
on Tuesday, August 12.

I am called Ayoo Proscovia [part one/four]

The following is a first person story written by IRMA advocate Ayoo Proscovia. Click here to check out her Friendly Rectal Microbicide Advocate bio.

This is the first of 4 installments which we will run between

today and next Friday - August 15.

I am called Ayoo Proscovia, a 44 year old widow with 4 children and 2 grandchildren and 4 orphans/dependents who are HIV positive and of ages 11-24 years old. I am a teacher by profession. I have 1st Degree in Education from Makerere University in Kampala, Uganda. I hold a Diploma in teacher Education(Tutor)and have a certificate in HIV/AIDS counseling. I am a National Award winner for contributing to the fight against Stigma and Discrimination against people living with HIV/AIDS in Uganda (2005).

I was appointed Headmistress of a grade 1 school in Tororo district, Uganda in 1998. I stopped performing the duties of headmistress on 15th-August-2003 suddenly. To date am on streets without a job. I have not been deployed to any school at all. I have been left in suspense for all this long and this has prompted me to share my experiences/testimony with colleagues so that together we might find an everlasting solution to problems of Stigma and Discrimination against HIV positive people especially professionals (Teachers).

I tested HIV positive in 1997. I was prompted to take the test because by then there was a lot of talk about HIV in the media and allover the place. I was appointed a leader of girl-guides in my district - how would I talk to the youths in my group when I did not know my own status?

I was in a polygamous marriage, my husband was a driver and unlike teachers these people are mobile and they marry from one taxi stop to the other. So I was the Nth wife- meaning I didn't even know my number amongst the other many wives my husband had.

My husband was a drunkard and such a cruel man that we never had any moments to discuss any such issues as multiple marriages/relationships. In fact, he was an alcohol addict. He was never sober at anytime.

After getting HIV positive results, I was referred to The AIDS Support Organisation (TASO) Tororo where I was registered as a client so as to get support services. I tested before my husband and kept quiet with the results for six months while refusing to share a bed due to anger in me and the cruelty of my husband-I only mentioned to him my results when he started showing the rashes, diarrhoea and hospitalised-for 4 weeks that was 6 months after I had tested.

I also take ARVs provided by CDC in Tororo Centre and I have taken them since 1st September 2003.

Read the next installment of "I am called Ayoo Proscovia"

on Saturday, August 9.