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I just got diagnosed with HIV. What do I need to know?

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  • If someone with HIV is taking effective HIV treatment and has an undetectable viral load, they cannot pass on HIV. It can take up to six months on treatment for some people to become undetectable.
  • It's now recommended that everyone diagnosed with HIV starts treatment straight away – regardless of their CD4 count (a measure of the health of your immune system).
  • This treatment can be as simple as taking one or two pills once a day.
  • Successful HIV treatment means you can expect to live as long as anyone else.
  • Once your treatment is working properly, you may only have to see a doctor once or twice a year.
  • HIV positive parents can have HIV negative children.

Will I get good medical care?

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It’s really important to go to a specialist HIV service to access medical care.

You’ll be advised to start treatment straight away in line with the British HIV Association (BHIVA) guidelines

These recommend that anyone with HIV who is ready to commit to treatment should start regardless of their CD4 count.

Most people who become ill from HIV are either diagnosed after they have become ill or they have not been using treatment.

If you don’t have an HIV doctor yet, call THT Direct on 0808 802 1221 and they'll put you in touch with one.

You can also read about your healthcare options in the UK and the HIV treatment that is free for all people living with HIV in the UK.

I want to get better and stay healthy. What should I do?

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There are steps you can take to ensure your general health is as good as it can be, so that HIV cannot take advantage of your already-weakened immune system.

Starting treatment is the most important way to avoid passing on HIV and protect your own health.

Make sure you visit your HIV clinic regularly.

Getting a late diagnosis

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Late diagnosis means that you've tested positive for HIV after the virus has already started to damage your immune system. If you're diagnosed when your CD4 count has dropped below 350 (or it reaches this point within three months of your diagnosis) this is considered a late diagnosis.

If you’ve been diagnosed late your doctor will want you to start treatment straight away unless they need to treat any other conditions you have first.

Treatment protects your immune system (even if it has been damaged) and if you’re taking it and have an undetectable viral load you cannot pass on HIV.

In 2016, Public Health England reported that 42% of people diagnosed with HIV found out late.
 

Being diagnosed with an opportunistic infection

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You might already feel unwell and many people who receive a late diagnosis are told that they have symptoms of an opportunistic infection.

These are infections which are able to get into your body more easily because your immune system has been weakened. Common opportunistic infections include:

  • tuberculosis
  • PCP pneumonia
  • shingles
  • lymphoma
  • Kaposi’s sarcoma
  • thrush.

Although opportunistic infections can be serious and impact your quality of life, you can work closely with your doctor to find the best combination of medication for you to help your immune system.

HIV medication is very good and although your immune system will already have been harmed, it's possible to repair a lot of the damage the virus has done if you take care of your health.

Following your medication instructions is especially important if you’re diagnosed late.

Diagnosed while pregnant

If you’re diagnosed during your pregnancy you’ll need to start taking treatment right away and continue to take it after your pregnancy in line with the new BHIVA guidelines.

Vertical transmission (from mother to baby) rarely happens in the UK now, thanks to a set of strategies known as PMTCT (prevention of mother-to-child transmission).

Do I have to tell anyone that I'm HIV positive?

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Before you make any decisions about who to tell about your status, you can talk it through with one of our helpline advisers or read some of our advice about disclosure.

Your doctor may ask you to disclose your HIV status to your partner(s) or anyone you might’ve shared needles with.

If you're nervous about disclosing your test result, you can ask your doctor or the local health department to notify your partner(s) that they might have been exposed to HIV – this is often called the partner notification service.

Find out about the law and HIV transmission.

What if I need help dealing emotionally with my diagnosis?

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A positive diagnosis can be quite a shock. You might begin to question your future and start reliving your past sexual behaviour. This is perfectly normal and it’s natural for you to start thinking 'What if?' and 'If only'.

It might be worth getting some help with your mental wellbeing and coming to terms with having HIV. You can access counselling with one of our trained counsellors, face- to-face or online. You can also call our helpline, THT Direct on 0808 802 1221 for more immediate support. 

Online peer support

You can join our peer support sessions on our community forums. All members, including the volunteers trained to run the sessions, are living with HIV.

If you’re newly diagnosed and need immediate support, please contact THT Direct on 0808 802 1221.

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