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Woman from Leeds diagnosed with rare brain tumour backs petition to increase funding and find cure

Pippa Simpson was only 19 when she was diagnosed with a grade 3 anaplastic pleomorphic xanthoastrocytoma and has backed a petition to find a cure.

By Clementine Hall

Pippa Simpson was only 19 when she was diagnosed with a grade 3 anaplastic pleomorphic xanthoastrocytoma (APXA), a rare and aggressive brain tumour.

Originally from Leeds, at the age of 18 she moved to London to pursue her dream of studying popular music at Goldsmiths College, but was forced to drop out and move back home just a year later after receiving her diagnosis.

Now 21 and having been in remission for a year, she campaigns to raise awareness for her rare condition and cancer in young people.

“I started experiencing what I thought was ‘Déjà vu’ when I was 12," Pippa told Your Harrogate. "My sister had the same thing when she was small so I didn’t think anything of it. When I moved to London I started having seizures and was told I had developed epilepsy, so was put on anti-convulsive medication.

"During this time I’d moved back home and started my music production degree at the Leeds Conservatoire. Only a couple of months in I got a call from my neurologist who told me my most recent MRI showed a brain tumour, and that it had been missed in my initial scan 1 year ago. I was told I would have brain surgery the following week."

[caption id="attachment_7736" align="alignnone" width="1493"] Pippa Simpson was just 19 when she was diagnosed with anaplastic pleomorphic xanthoastrocytoma, a rare brain tumour.[/caption]

Since Pippa’s first craniotomy in March 2019 she has endured 6 weeks of radiotherapy, targeted oral chemotherapy, and IVF injections to freeze her eggs due to the effects that the treatment may have had on her fertility.

Determined not to let her condition define her, Pippa demonstrated and continues to demonstrate incredible strength and bravery, undergoing all her treatments whilst continuing her studies at the Leeds Conservatoire, which she is now due to graduate from in the summer.

Pippa continued:

"The first biopsy came back as a rare grade 3 APXA tumour. During that meeting every word you don’t want to hear was said: “rare”, “grade 3”, “tumour”, “malignant”, “I’m so sorry Pippa”.

"I literally broke down, I can’t explain the feeling, I just thought “this is it”. I was appointed to a team who set out my 6 weeks radiotherapy treatment plan starting March 2019.v Radiotherapy was Monday-Friday every day for 6 weeks, so I treated it like a job.

"I didn’t find it difficult, I just carried on with my assignments and got through 1st year. I had a relapse in August 2019 so headed back into my second surgery which was followed by a course of chemotherapy. I got the all clear in December and have now been in remission for over a year and have almost finished my degree."

Pippa works with numerous charities, including volunteering at the NCRI (The Institute for Cancer Research) and representing young people who have experienced radiotherapy at the Children’s Cancer & Leukaemia Group to help spread awareness about her rare condition.

She is also a part of a new young advisory group named STARS which researches and discusses the reintegration of young people with cancer into society. She runs her own blog (@pippa_blog) where she is open about her diagnosis and her experience as a brain tumour survivor. 

In July 2019, her sister Anna ran a half marathon for the Brain Tumour Research charity, raising more than £2,400:

“I can’t describe how loved and supported that made me feel, bringing some positivity and distraction to people going through their diagnosis is so powerful.”

Pippa is now supporting the Brain Tumour Research’s petition to increase the national investment into brain tumour research to £35 million a year.

The petition has reached over 100,000 signatures meaning it will be presented to the prime minister during March Brain Tumour Awareness Month 2021. Although this is a huge milestone for the charity, Pippa is urging others to sign the petition and show their support:

"Just because we’ve surpassed the 100,000 signature mark doesn’t mean we should stop signing and sharing.

"An increase in funding for brain tumour research would make a significant difference in the support they can provide to those with brain tumours, as well as contributing to the lifesaving research to help understand such complex, unrecognised and untreatable tumours. Fundraising and setting challenges that BTR organises makes such a difference to those going through treatment, it makes you feel less alone."

Over the past two years Pippa has learnt about the lack of awareness regarding brain tumours in young people and wants to highlight how important it is that people educate themselves on the matter.

As it stands, just one per cent of the national spend on cancer research has been allocated to brain tumours.

Inspired by her own journey, Pippa now hopes to help drive change and work for the charities whose research saved her life, and she herself continues to be a huge inspiration to other young people who are experiencing what she’s been through:

"I will always support charities raising awareness for brain tumours and cancer in young people. I’ve learnt that brain tumours do not discriminate,  it can happen to anyone at any age. It’s been an insight into a whole other world, one which I wouldn’t have considered beforehand."

The petition can be found here, whilst you can find out more information about the disease from https://www.maggies.org or https://www.teenagecancertrust.org Read more local stories from Your Harrogate here.

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