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Halfway through, and Thanksgiving reflections
November 28th, 2011 by cburkot
I’m now 4 days through the weeklong Jelly Bean Challenge. Taking 4 ‘pills’ per day (I’m on Protocol 1) has been very illuminating – but illuminating not so much in terms of HIV and ARV medications, which I’d like to think I knew a fair bit about already. Rather, it’s been surprisingly effective in showing me just how unstructured my days tend to be, and therefore how lucky I am to live without any chronic illness which really demands a routine and stability. For example, when I began the challenge, I planned to follow a schedule where I take two of my drugs, Atazanavir and Ritonavir, with my dinner every evening. However, I subsequently realised that I very rarely eat dinner at the same time day after day – for the last 4 days, for example, I ate around 11pm, 6pm, 9pm, and 7pm. The irregularity of my eating patterns made me wonder whether it is more important for me to take my drugs with food or to take them at the same time everyday, even if I don’t have anything to eat at that moment — does anyone know the answer?
The other big realisation I’ve had over the week so far is how difficult it would be to keep a diagnosis of HIV a secret, and still live an apparently ‘normal’ life. I came to this realisation on the first day of the challenge, which happened to coincide with Thanksgiving. Thinking about how I would have handled being HIV+ and taking a complex regime of medication while staying with all of my relatives (which effectively means no privacy or space) would have bordered on the impossible without disclosing my status. My side effects for that day – nausea, dry mouth, and stomach pain – also made the prospect of eating a big Thanksgiving meal less than appetizing. This is perhaps another lesson to be learned about what it might be like to live with HIV: in some ways, perhaps it would not be the day-to-day chores of coping with taking medications and addressing side effects that would be most difficult aspect of a life lived with HIV. Rather, I am inclined to think that what might be most frustrating would be when your memories of the big events – the holidays that only come once a year, like Thanksgiving – become hijacked by unpleasant side effects over which you have no control.
So this year, I was certainly personally very thankful that I am not HIV-positive — but also very thankful that we now have drugs with the potential to extend the lives of those who are positive, and save the lives of those at risk! http://stopaidscampaign.org/campaign/end-to-aids/
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Day two – A never-ending hangover
November 27th, 2011 by MagHistorian
Today feels like a really bad hangover – possibly the worst in my life. I haven’t felt this sick since the morning after my 18th birthday bash. It’s as if there’s an axe rammed into my skull. My head feels like it’s going to explode from all the throbbing. I drag my body, kicking and screaming, out of bed for the core lecture at 9. As I tread through John’s Backs towards the Sidgwick site, I feel a hot, choking, rising sensation within me, and before I know it I am chundering the contents of my stomach into a ditch. I feel like a right mess. Thankfully no one saw me.
Went to Sainsbury’s to pick up some lunch, and bumped into my neighbour Cathy. Just as I said ‘hi’ to her, a man brushed past her, causing her to drop the file she was holding, and scattering its contents across the aisle. As I picked up her notes, she said ‘thank you’ which warmed my heart so much. I don’t know why; all she said was ‘thank you’ – perhaps it was the way she said it – but it made me feel as if I had done something extraordinary for her. I almost started skipping as I left the store.
Come six o’clock, I tried calling and texting Jimmy and Dark Horse to see if they were up for dinner tonight. Most days of the week we cook or go to have dinner together – it was essentially how the three of us – neighbours during our first year – got to know each other. No luck tonight though; Jimmy’s away to Karate and Dark Horse’s phone isn’t picking up. I try asking Cathy if she’s interested, but, as usual, to no avail. It’ll have to be a solitary Sainsbury’s spaghetti tonight. I’ve been in this situation countless times before, but for some reason I feel as if everyone is just leaving me, abandoning me – dare I say, betraying me. As I watch my packed meal go round and round in the oven, I feel the ground give way and the tears swell up inside.
I take my medication. After calming myself down through a mixture of Youtube comedy and music, I try and get slug it through another few hours of reading. My session is but short, however, by a rumbling sensation in the stomach. Before I know it, I am crouched over the loo, spewing out the spaghetti I had for supper. My migraine returns with a renewed viciousness, ruling out any further work for the evening.
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First Day!
November 25th, 2011 by Malpas123
So, it was my first day taking part in the Jelly Bean Challenge today. Already I’m seeing some of the difficulties people on this medication go through every day!
Firstly, just remembering to take the “pills” was difficult – I am on “Protocol 3″, which involves taking 10 pills a day, all at different times. Some pills must be taken with food and some without food, another complication. Then there was the confusion over which bottle contains which pill! I have three bottles with long drug names – Zidovudine, Lamivudine, Nevirapine – and remembering which ones I had/had not taken got a bit confusing at times. I am even unsure whether I took the right amounts of each drug for my first dose, a triviality when it comes to taking Jelly Beans but much more serious when real ARTs are involved.
The side effects we were all sent made my day a little more difficult too. For Zidovudine I was told I had a taste disturbance and so should add a strong flavour to my food. The super super spicy dinner I made was bearable, but the thought of experiencing it for every meal did not fill me with excitement. For Nevaripine, today I had myalgia (muscle ache), so I had a warm shower in the evening to see if that helped. To be honest I was pretty busy with work in the evening, and definitely would not have taken the time out for a shower otherwise!
All in all then the first day was an eye-opener, definitely confusing and annoying at times but thought-provoking none the less, and that’s what it is all about! I will re-post in the next few days to let you know if I have become more accustomed to the ART way of life or not!
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I feel really old these days.
November 24th, 2011 by MagHistorian
It’s been like this ever since I started this treatment. Everything’s changed. Thursdays used to begin with at 5 to noon, having spent Wednesday recovering from the Monday all-nighter and Cindies on Tuesday. I’d put on whatever I could find lying on the bed/chair/coffee table/floor/ceiling/bin (including once a beer-stained teletubby costume from the inaugural college bop) before making a mad dash across college for the noon supervision. An hour of surreptitiously avoiding answering my supervisor’s questions would be followed by lunch with Jimmy and Dark Horse, when we’d re-charge our intellectual batteries over BLTs and banter. Then off to the UL for a good few hours on my next essay. 6pm. I’d make a beeline for the canteen, and wolf down some grub before popping over to the Union. Two debates later I’d be in the bar chatting with Megan about everything and anything. I somehow ended up bumping into her every week. She gave me her number some weeks ago. It looked like something was going to happen between us…
But no. Not after the treatment started. These days, unless I’ve got a supervision or a lecture I absolutely have to go to, I stay in my room. I simply can’t handle going out. Not even downstairs to the gyp room. I have to take lamuvidine tablets, which means that I’m out of breath after a 5 minute walk to Sainsbury’s. The nevaripine tablets I take make my muscles ache so badly that I need a walking stick. I literally have to crawl up and down the stairs. And on the rare occasions that I do go out, I always take a bath when I get back – to ease the pain. I also find myself having to lie down a lot – because sitting up is too painful. My body is literally dead after lectures and supervisions. Because of Zidovuzine I can’t taste anything unless I coat it with syrup or chilli sauce. I’m meant to be in the prime of my youth, relishing what everyone tells me should be the best years of my life. and yet here I am, confined to a dark room with the curtains drawn, watching valuable time slowly slip past. And what’s really gutting is that without the medication – with all its crippling side-effects – a common cold could literally kill me.
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World AIDS Day 1st December
November 17th, 2011 by hmr34
World AIDS day is coming up on 1st December – we’ll be out and around in town campaigning about the patent pool and using treatment for prevention. If you’d like to join us, send us an email: stopaids@cusu.cam.ac.uk.
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StopAIDS JELLY BEAN CHALLENGE!
November 17th, 2011 by hmr34
In recognition of World AIDS Day 2011, Cambridge Student StopAIDS invites you to experience what a week of life is like for someone on HIV/AIDS antiretroviral medication. Although these medications have transformed the lives of millions of AIDS sufferers worldwide, it is tough to take so many pills with severe side effects everyday. By joining our challenge, from November 23 to December 1 you get to eat (free!) yummy jelly beans everyday, which represent the medication – but you will also receive daily representative “side effects”… In exchange, we invite you to blog about your experiences over the week and help us to raise funds for our designated charity this year, the Hillcrest AIDS Centre Trust in South Africa (http://www.hillaids.org.za/).
To learn more and collect your jelly beans, please join us at our LAUNCH EVENT on WEDNESDAY NOVEMBER 23 from 7PM to 10PM in the CAMBRIDGE UNION SOCIETY BAR! If you have further questions, or would like to take part but are unable to attend the launch, contact us at tt315.
http://www.srcf.ucam.org/camaids/ and find us on Facebook: “Cambridge Stop AIDS Campaign” and “JELLY BEAN CHALLENGE: Launch Event”
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“Unite to Fight AIDS” Speaker Tour 2011
November 17th, 2011 by hmr34
This year, the Student Stop AIDS Speaker Tour stopped by Cambridge to share the poignant stories of three individuals from around the world.
At first glance, Mohammed, Lea and Victor seemed to have little in common. Mohammed is a young man from Gambia, Victor is 28 and from Nigeria, and Lea a young mother living in Bedford. Yet it soon became apparent that, in addition to their youth, they also share an HIV positive status.
But HIV isn’t the only thing they are positive in; what really defines them is their attitude to life, which is remarkably optimistic. This year they joined the Speaker Tour to spread the word that young people living with HIV—just like them– can be as confident and capable as anyone else.
Take Mohammed for example: at the age of 20, he has already touched the hearts of young people across 22 countries through his organisation, Aid for Smiles: global social activists empowering neglected, and socially disadvantaged, young people. Mohammed regularly addresses the misunderstandings and stigmas associated with HIV in his attempt to give youth back their lost hope and sense of place in society.
Mohammed was once ridiculed for the condition he got through ablood transfusion–he even became suicidal at one point in his life. Now,his happiness and joy now could not be more pronounced. “What drives me is optimism“, he said; and it is this motivation that Stop AIDS strives to inspire in the young people in the UK, HIV positive or not.
Like Mohammed, Lea raises awareness about HIV and young people. As a mother of two HIV-negative children, she has a strong feeling that the best way to tackle HIV is prevention. The way she talks about protection adds a different dimension to the “what can we do about HIV?” discussion. She reminds us that HIV is not only relevant for HIV positive people, but that each and every one of us influences its impact and control through the decisions we make about our own preventative behaviours.
It is the ambition of Cambridge Stop AIDS Campaign to spread the powerful messages of these individuals as widely as possible. Although the Speaker Tour has now passed through Cambridge, Stop AIDS is striving to extend the awareness and dedication these three young adults represented.
We invite attendees and anyone interested to join in the Jelly Bean Challenge, an opportunity tounderstand what treatment is like for people living with HIV. Not only is this an interactive way of getting a glimpse of what life with HIV entails, but all the money raised will go toHillsAids in South Africa.
HillsAids delivers home-based care, counseling services and training programmes in crafts for HIV positive people. As Mohammed says, “The commitment to reverse HIV and AIDS is in our hands; and resilience and hope are never lost if we entrust our destiny to this cause”. Cambridge Stop AIDS will do all it can to ensure his message is extended as far as possible.
By Eva Teng, Cambridge Stop AIDS Campaign Publicity Officer
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StopAids Speaker Tour 2011
September 22nd, 2011 by hmr34
24th October at 6.30pm at the Cambridge Union
In its sixth year, the Unite to Fight AIDS Speaker tour will be bringing speakers from across the globe to talk about how HIV has affected their lives.
This year we will hear from Mohammed from the Gambia, Lea from the UK and Victor from Nigeria. Mohammed broke the silence shrouding the issue of HIV in the Gambia when he portrayed the young face of the epidemic in the media and openly talked about his HIV status in an open letter to the president. Lea is a young mother living in Bedford with her two HIV negative children, committed to educating young people across the UK in protecting themselves. Victor has been living with HIV for the last 7 years and is an advocate for the rights of those key populations affected by the pandemic with an emphasis on men who have sex with men. The young people speak not as helpless victims, but as hopeful, determined and capable individuals. Their achievements should inspire us to action here in the UK.
The Tour is an amazing opportunity for us to hear about the real stories behind the pandemic and to understand what living with HIV means to someone. The evening will also provide a chance to find out about what you can do to prevent more people from being infected with a disease that we are entirely able to eradicate.
Map of the Cambridge Union Society.
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Student Stop AIDS Speaker Tour 2009
October 8th, 2009 by apj31
Student Stop AIDS Speaker Tour 2009
October 12th at 7pm in the Elton-Bowring Room, Gillespie Centre, Clare College*
Young people whose lives have been deeply affected by HIV are travelling from across the world to Cambridge to share their stories. This is an incredible chance to find out about the reality of the AIDS epidemic and our efforts to stop its spread.
This year’s speakers will include Daniel Kettor, who was motivated to become an activist following the death of his sister, Marietta, from AIDS, and now works to raise awareness of HIV in Sierra Leone; Chinyanta Chimba, an activist from Zambia whose work ranges from education and outreach amongst her local community to speaking at the UN, and Tony Ray, whose discovery that he was HIV-positive led him to become a peer education in New York City’s HIV prevention and harm-reduction programmes.
Come, listen, and be inspired by these stories of three young people’s roles in the fight against HIV/AIDS.
*(To reach the Gillespie Centre, go into Memorial Court from Queen’s Road, and turn right)
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Welcome to all freshers!
September 29th, 2009 by apj31
Come visit us at stall O20 at the Freshers’ Fair on October 6th and 7th! We’ll be there to answer any questions you have about the Stop AIDS Society, our aims, what we do, and how you can get involved.
An advance date for your diaries: our exciting first event of term will be the Student Stop AIDS Speaker Tour 2009 - October 12th at 7pm in the Elton-Bowring Room, Gillespie Centre, Clare College*
Young people whose lives have been deeply affected by HIV are travelling from across the world to Cambridge to share their stories. This is an incredible chance to find out about the reality of the AIDS epidemic and our efforts to stop its spread.
This year’s speakers will include Daniel Kettor, who was motivated to become an activist following the death of his sister, Marietta, from AIDS, and now works to raise awareness of HIV in Sierra Leone; Chinyanta Chimba, an activist from Zambia whose work ranges from education and outreach amongst her local community to speaking at the UN, and Tony Ray, whose discovery that he was HIV-positive led him to become a peer education in New York City’s HIV prevention and harm-reduction programmes.
Come, listen, and be inspired by these stories of three young people’s roles in the fight against HIV/AIDS.
*(To reach the Gillespie Centre, go into Memorial Court from Queen’s Road, and turn right)
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