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Ellon Mother With Life-limiting Condition Calls For More Understanding Of Hidden Disabilities

A woman from Ellon who lives with a challenging rare disease is calling for more understanding of hidden disabilities.

Tarves-based Nicki Ross has pulmonary hypertension (PH), a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs.

She struggles to breathe, can't walk more than a few metres unaided, and is constantly exhausted – but to look at her, you wouldn't know that anything is wrong.

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Nicki, 51, is backing an awareness initiative to encourage understanding of PH and highlight the difficulties of living with invisible illnesses.

PH Day UK takes place on Friday 1 November and is organised by the Pulmonary Hypertension Association (PHA UK), a charity that supports people affected by the condition.

Nicki was diagnosed with PH in October 2022 and she also lives with fibromyalgia, a long-term condition that causes pain all over the body.

She uses a mobility scooter or wheelchair when she's outside of the house, but still encounters judgement for not 'looking' ill.

Nicki Ross has a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs -Credit:PHA UK

Nicki said: "I park in disabled bays as I have a blue badge, and when I walk out of the car unaided I get queer looks from people.

"Then when I'm in my wheelchair, it's like I'm invisible. People often go through doors ahead and let them close on me.

"Because I look healthy, a lot of people don't seem to understand that even the slightest exertion can wipe me out. If I walk the length of my street, I have to go to sleep for two hours to recover.

"Because I look ok, it's hard for others to understand that there is something severe going on in my body."

Investigations have shown that Nicki's PH was caused by a faulty gene, and her 20-year-old daughter Olly will now be screened for the same mutation.

Nicki receives treatment for her PH at the Golden Jubilee National Hospital in Glasgow, the only hospital in Scotland that provides specialist care for the condition.

She takes three different types of medication, which help to control her symptoms, but there is no cure.

"I'm stable at the moment, but I know that I will deteriorate in the future", she said. "Despite everything though, I do feel lucky.

"I've responded well to the medication, and although I'm not able to work, we can still go on holiday. We went to DisneyWorld recently and I wore a badge which said, 'I'm celebrating my life'.

"When I was diagnosed, we didn't even know if I'd survive, so now it's about making as many memories as possible."

PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries and those with the condition live with severe breathlessness and fatigue.

Although it can be connected to some other diseases, or related to faulty genes, many people develop PH 'out of nowhere'.

Dr Iain Armstrong, chair of PHA UK -Credit:PHA UK

Dr Iain Armstrong, chair of the charity PHA UK, said: "Very few people have heard of PH and those with the condition often appear well from the outside.

"It's important for the general public to understand the challenges of living with a hidden illness, and to consider that not all disabilities are visible. We are grateful to Nicki for sharing her story to raise vital awareness of PH."

You can hear more from Nicki in this video. To find out more about pulmonary hypertension, visit www.Phauk.Org

AI Breakthrough In Pulmonary Hypertension Diagnosis: CHEST 2024

PULMONARY hypertension (PH) is a progressive and potentially fatal condition that can go undetected until it reaches advanced stages. Current diagnostic methods, such as transthoracic echocardiography (TTE), lack both sensitivity and specificity and may require invasive right heart catheterization to confirm a diagnosis. However, a groundbreaking study presented at the CHEST Annual Meeting 2024 in Boston, held from October 6 to 9, introduces a multimodal fusion model (MMF-PH) that could transform the detection of PH.

This innovative deep learning algorithm integrates data from electronic health records, including chest radiographs, ECG, demographics, and TTE findings, to deliver more accurate results than traditional TTE screening methods alone. The study found that MMF-PH demonstrated superior diagnostic performance across various patient groups, showing great promise for clinical use.

The research analyzed a dataset of 4,576 patients with unconfirmed but suspected PH at Beijing Fuwai Hospital, China, between 2019 and 2021. Of these, 2,451 cases were confirmed using right heart catheterization. The algorithm was rigorously trained and validated using both retrospective and prospective data, including external datasets from other medical institutions.

Dr. Zhihua Huang, from Chinese Academy of Medical Sciences and Fuwai Hospital said of the algorithm: "This multimodal deep learning algorithm enables early, accurate identification of pulmonary hypertension and its subtypes, potentially reducing the need for invasive procedures. It has the potential to significantly improve patient management and outcomes while reducing healthcare costs."

With its potential to improve early diagnosis and guide personalized treatments, the MMF-PH algorithm could revolutionize the clinical management of pulmonary hypertension, offering a less invasive, AI-driven solution.

Reference: Huang Z et al. Revolutionizing pulmonary hypertension detection: a multicenter study on a comprehensive multimodal deep learning approach. Abstract 4029. CHEST Annual Meeting. October 6-9, 2024.

Anaya MalikAMJ

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