HTLV Action And Awareness

Raising awareness of HTLV and calling for a national antenatal screening programme (UK). The cancer HTLV-1 causes is incurable, but transmission is preventable.

[Adine_A @abbap]

Brazil is ahead of the game in HTLV policies; testing pregnant women for HTLV… UK far behind- National Screening Committee UK feel that screening pregnant women not useful- Is it because it’s mainly a BAME population? #HTLV2024

[HTLV Action And Awareness @HTLVAction]

5 years ago today, my partner was diagnosed with ATLL. I drove home, not knowing if he would survive 24 hours.
That night, I researched ATLL, whilst cuddling our baby.
The prognosis was dire...he wouldn't see our son start school.
5 years on, ATLL prognosis has not changed.

[HTLV Action And Awareness @HTLVAction]

There is no cure for ATLL, the cancer HTLV causes.
We can reduce transmission of HTLV through screening.
Yet no national screening programme exists in the UK.
We can support those with ATLL caused by HTLV.
Yet @macmillancancer do not provide information on ATLL.
#BAME #HTLV

[HTLV Action And Awareness @HTLVAction]

HTLV causes an aggressive, incurable cancer called Adult T-cell Leukaemia Lymphoma (ATLL). Trying to find information on ATLL can be frightening and isolating for patients.
We call for charities to recognise ATLL on their websites.
@macmillancancer @CR_UK
#BAME #HTLV #ATLL

[HTLV Action And Awareness @HTLVAction]

Imperial College's Afro-Caribbean Society is holding an event today, 18.00 BST, named 'Challenging racism in the NHS, one case at a time'.
HTLV is more common in BAME communities. Would there be more research if HTLV was prevalent in other communities?
https://t.co/vr2lHG7zWK

[HTLV Action And Awareness @HTLVAction]

Public comments close today.
Please submit your views on why antenatal screening for HTLV must be introduced. …https://t.co/8GfA7wKS9d

#HTLV @htlvchannel @HTLVaware @HTLVnet #UKNSC #BAME #MyBodyMyChoice

[HTLV Action And Awareness @HTLVAction]

If you haven't already, please submit your comments to the UK NSC encouraging them to recommend antenatal screening for HTLV: https://t.co/vsXZyiAqSg

Comments close on 6th October.

#HTLV #UKNSC #BAME #HTLVNotAnotherFamily #antenatal

[HTLV Action And Awareness @HTLVAction]

With a day to go until the UK NSC close their public consultation for the introduction of antenatal screening for HTLV, here is a summary of 10 reasons why screening should be introduced: https://t.co/mNYSnYk6PF

#HTLV #BAME #UKNSC #antenatal #HTLVNotAnotherFamily

[HTLV Action And Awareness @HTLVAction]

A week to go until the UK NSC close their public consultation on introducing antenatal screening for HTLV.
The reasons that the NSC have used previously to prevent the introduction of screening are dissected in my most recent video: https://t.co/HV26KUNfOT
#HTLV #UKNSC #BAME

[HTLV Action And Awareness @HTLVAction]

The UKNSC have opened their public consultation on antenatal screening for HTLV.
They cite 7 weak arguments as to why screening is not recommended. It is imperative we submit our own comments so voices of real people, en masse, are heard.
https://t.co/vsXZyiS2gQ
#htlv #uknsc

[IHV @IHVmaryland]

Did you know, in 1980, @DrRobertCGallo and colleagues, discovered the first human retrovirus that can cause a form of leukemia and a fatal disease of the spinal cord, known as human T-cell leukemia virus-1 (HTLV-1)?

[HTLV Action And Awareness @HTLVAction]

Children infected with HTLV-1 can present with infective dermatitis.
This may develop into incurable cancer (ATLL) or a neurological disease (TSP/HAM) in adulthood.
Yet in the UK, we don't have routine antenatal screening for HTLV.
Vertical transmission continues.
#UKNSC #HTLV

[HTLV Action And Awareness @HTLVAction]

HTLV-1 is one of the most potent human carcinogens known to man.
Transmission is preventable, so why not prevent it?
#HTLV1 #HTLV1NotAnotherFamily #Cancer #MoneyOverLife #Carcinogen #Screening #Virus #ATLL

[HTLV Action And Awareness @HTLVAction]

UK NSC state that antenatal screening for HTLV-1 should not take place as a positive result "may cause significant anxiety and stress".
Have they considered the stress experienced by mothers who have passed HTLV-1 to their babies because they WERE NOT OFFERED SCREENING?
#HTLV

[HTLV Action And Awareness @HTLVAction]

Royal College of Midwives and the UK Government: urges new mothers to breastfeed for at least 6 months.
Also the Royal College of Midwives and the UK Government: refuses to recommend screening pregnant women for HTLV-1, that can be passed on by BREASTFEEDING for over 6 months…

[HTLV Action And Awareness @HTLVAction]

I also have a Facebook page:
https://t.co/2R4O0zHP95
#HTLV1NotAnotherFamily #Awareness #HTLV #Prevention

[HTLV Action And Awareness @HTLVAction]

Here is a link to the first video on my Youtube Channel to describe what HTLV-1 is.
I explain why screening for this virus should be introduced in antenatal care.
#HTLV1NotAnotherFamily #Prevention #Screening #HTLV
https://t.co/Yi5MTFsmUc

[HTLV Action And Awareness @HTLVAction]

Screening for HTLV-1 should be routine for high risk expectant mothers. Please read and sign my petition: https://t.co/zKSyWEhkPU
#HTLV1NotAnotherFamily #HTLV