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This

is how we do it


Written by Faye Reason, with special thanks to all of the Teen Spirit members who shared their stories Illustrated by Toby Jackman Produced by Bold Creative. Thanks for all the energy put into making this book a reality. Copyright Body & Soul 2010 Print managed by Cyan Group www.cyan-group.com


This

is how we do it Taking medication can be a scary prospect. It can feel tough having to take pills everyday, and then on top of this, experiencing possible side effects. We’ve felt the fear of sleeping over at a friend’s house and having to keep it secret. We’ve struggled with the routine of taking them everyday, and we’ve struggled with the actual swallowing. We know. We’ve been there. It does get easier. We all find our own way, but between us we can help each other. We know how difficult it can be, so we have collected some ideas that we hope will conquer your fears about taking medication. You can email any of us with your thoughts and questions, or if you just need to be in contact with someone who’s been through the same thing, we are here. David, Sarah, Michael, Tamara, Ashley, Eva, Robin, Ahmed, Max and Anna Contact us at teenspirit@bodyandsoulcharity.org


Words we often hear Adherence: Taking your medication at the right time, at the right dose, in the right way.

Opportunistic Infection: An infection that occurs after your immune system has been damaged by HIV.

Antibody: A protein that is part of the immune system and which is produced to fight an infection.

Side effects: Unwanted effects of a medication.

Anti-HIV medication: Medication that reduces the amount of HIV in your body by helping to prevent the virus from making copies of itself and multiplying. CD4 cell: A type of white blood cell that that is part of your immune system and helps your body fight infections. CD4 count: The number of CD4 cells in a small sample of blood (not your whole body). It is a good way to see how strong your immune system is. The aim of treatment is to get your CD4 count higher. Combination therapy: Two or more drugs used together to treat HIV. Drug resistance: Every time HIV copies itself, the virus can change or mutate slightly. Some mutated viruses can multiply even in the presence of a particular anti-HIV medication – this is known as drug resistance. Adherence is key to preventing drug resistance. Highly Active Anti- Retroviral Therapy (HAART): A phrase sometimes used to describe combination therapy with three or more anti-HIV medications. Immune system: The collection of cells and organs within your body whose job it is to fight infections and illnesses.

Treatment regimen: The collection or combination of anti-HIV medication you take to improve/maintain your health. Treatment simplification: If you find it difficult to follow your prescription, your doctor might switch you to medications that are easier to take (e.g. fewer medications and/or medications that are taken less often). Undetectable (viral load): Less than 50 copies of HIV in a millilitre of blood. Viral load: The number of copies of HIV per blood sample. In an untreated person with HIV, this can be in the thousands or even millions. Useful websites: www.namlife.org www.i-base.info www.yourstoryyourscript.co.uk


Body & Soul Established in 1996, Body & Soul is a pioneering UK charity that supports children, young people and families living with or closely affected by HIV. Our vision is a world free of fear and prejudice, where HIV is no longer discriminated against and where everyone has access to treatment, love and care. www.bodyandsoulcharity.org

Bold Creative is an award winning creative agency that harnesses gritty stories and experiences to educate, inspire and unlock the true potential of young people. www.boldcreative.co.uk

OPM OPM is an independent public interest company dedicated to improving social results. We help organisations that want to make a greater social impact and one of our specialisms is conducting innovative and high quality research. www.opm.co.uk


“I’m 19 and I don’t even think about it anymore, just a part of my routine” lO YOUNG PEOPLE SHARE THEIR DIFFERENT

THOUGHTS ON MANAGING LIFE WITH MEDICATION

Registered Charity No: 1060062 Company Limited by Guarantee No. 3245543

its part of my life,


This is how we do it  

This is how we do it

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