Rad Chat · Naman Julka-Anderson and Jo McNamara

E202: Sarah Phillips - Living With an Incurable Disability

March 2, 2026·45 min·3 clips

Sarah's 'big black dot' metaphor: you don't make the pain disappear — you paint color around it, one moment of joy per day, until that becomes your new world.

1. Rad Chat episode 202 is part of the Equity, Diversity and Inclusion series, featuring guest Sarah Phillips speaking about living with incurable conditions and accessible clothing design. 2. Hosts Jo McNamara and Namajorke Anderson both work in therapeutic radiography and oncology; Sarah Phillips has a clinical background, which she credits with helping her navigate her multi-team medical care. 3. The episode's core purpose is to share Sarah's journey from suicidal ideation after her diagnoses to building businesses, a modeling career, and adaptive clothing co-designed with a major UK supermarket. 4. At 31, Sarah developed two rare simultaneous conditions: HNPP — hereditary neuropathy with liability to pressure palsies — a genetic neuromuscular disease that causes paralysis when pressure damages demyelinated nerves; and a metabolic condition causing her body to burn over 5,000 calories per day, requiring nightly enteral feeding via a PEG tube. 5. Sarah has been paralyzed from the waist down three times due to HNPP, with the most recent episode leaving doctors who did not expect her to recover mobility; she has permanent drop foot in her left foot and six currently trapped nerves. 6. Her metabolic condition creates a risk of refeeding syndrome — a potentially fatal electrolyte imbalance — if she misses more than a few nights of tube feeding, meaning a sickness bug brought home by her children can result in a hospital admission. 7. Sarah is studied by the Institute of Rare Diseases for HNPP because her presentation is unusually complex, and her consultants describe her as more expert in the condition than they are. 8. She cares for two neurodiverse children, one of whom has a profound learning disability, severe autism, is non-verbal, and attends a special school; he has injured Sarah on multiple occasions and attempted to pull out her feeding tube. 9. Hospital nurses reported her as a suspected domestic abuse victim because of unexplained bruises; Sarah confirmed she was being 'domestically abused, but by my child.' 10. When her symptoms began, Sarah remortgaged her house while still employed to take out equity, and separately had critical illness cover she had taken out two years earlier for around seven pounds per month, which paid out and provided financial security. 11. Her previous employer, who contracted her to write PIP medical assessments for the DWP, provided extensive adaptations and weekly support parcels through multiple hospital admissions of one to six weeks each time. 12. After her PEG feeding tube was placed, Sarah was approached about modeling, signed with a UK adaptive modeling agency, and walked the catwalk with her tube visible. 13. She co-designed the Asda George adaptive clothing range alongside Natalie Woodward and the late Nikki Newman, who had breast cancer and envisioned the range before her death; Alex at Asda has continued the project. 14. The adaptive range includes MRI-safe plastic zips, feeding tube access, port and line access for cancer infusions, expandable waistbands, easy-access stoma bag openings, and catheter leg bag access — designed to allow patients to dress themselves without carer help. 15. A key design goal was affordability: the only prior adaptive clothing was priced at around £79 per item, making it inaccessible for people on disability payments or sick pay; the Asda range was designed to be as cheap as possible while remaining fit for purpose. 16. At her lowest point, Sarah was told at 31 that the solution to her mobility problems was admission to a nursing home; this triggered a full breakdown and suicidal ideation. 17. She describes her recovery from that breakdown as starting with finding one moment of joy per day, building what she calls 'color around a big black dot' — the illness stays present but a new life forms around it. 18. Sarah argues that early palliative care referral is the single most transformative intervention for people with incurable conditions, reframing it as expert symptom management that restores function — not end-of-life care. 19. Healthcare professionals working with oncology or chronic illness patients, adaptive clothing advocates, and disabled people or their carers will find the most value in this episode. 20. Listeners seeking technical radiography education, clinical research content, or formal presentation style may find this episode emotionally heavier and more patient-narrative in form than clinical.

As heard by us

A candid story about access, grief, and rebuilding life with purpose.

Sarah Phillips's account stays close to the practical side of living with incurable conditions: being told a nursing home was the answer at 31, the need for accessible clothing and accessible homes, and the choice to build an adaptive housing company with a wider social purpose.

Read the full review in PlayNext →

Why you'd press play

You want a disability story that is honest, practical, and quietly defiant.

Read the full recommendation in PlayNext →

Listen to the show on

Apple Podcasts Spotify

Play clips from this episode More from Rad Chat