Firstly, thank you to every single person who has signed, shared, commented, and supported this campaign. Every voice matters, and because of you, this issue is finally being heard.
Behind the scenes, this hasn't stopped. My friends and I have been contacting MPs, sharing across social media, and doing everything we can to make sure women with NF1 are no longer ignored.
But we've also received a response that is incredibly disappointing.
The Secretary of State for Health and Social Care has acknowledged that women living with NF1 have a moderately increased risk of developing breast cancer. Yet because NICE guidance does not specifically address NF1, citing the complexity of the condition, there are currently no plans to lower the age for routine breast screening. Instead, women are told to speak to their GP from the age of 40.
How can that be acceptable when the evidence shows the increased risk begins around 30?
That's potentially 10 years when cancers could develop before women are even considered for routine screening.
Women with NF1 should not be left in limbo because their condition is considered "too complex." Complexity should never be a reason to delay action when lives are at stake.
This campaign isn't about asking for special treatment. It's about ensuring healthcare reflects the scientific evidence and gives women with NF1 the same chance of early detection that could save their lives.
We will not stop because we've received a disappointing response. If anything, it has strengthened our determination to keep fighting until women with NF1 are recognised in national screening guidance.
Please keep signing. Please keep sharing. Please keep talking about this.
The more people who stand with us, the harder we are to ignore.
Our lives are worth protecting. Early detection saves lives. It's time the screening guidelines reflected that.