Julie Toghill and Harmony Hart look like perfectly healthy women. But both have a very rare and incurable auto-immune disease which leaves them in constant pain and facing an uncertain future.
Julie, 43, and Harmony, 25, have scleroderma – a condition which affects their blood vessels and collagen production and can damage the skin and internal organs through scarring and poor blood supply.
Although both women rarely show any signs of the condition on their skin, their internal organs and muscles bear the brunt.
‘It does mainly affect us inside,’ says mum-of-three Harmony, from Emanuel Street, Portsmouth.
‘But because it affects us inside, people don’t know you have it and that there’s anything wrong because they can’t see it. But it is serious and affects you every day.’
Harmony and Julie are just two of about 6,600 people who have the disease in the UK. Neither liked talking about their condition at first, but over time they have come to accept it and learn to live with it.
Now during Scleroderma Awareness Month the pair, who found each other through a scleroderma group on social networking site Facebook, want to raise the profile of the disease and raise money for the Scleroderma Society which supports those with the condition.
Julie, a mother-of-seven, from Hatfield Road, Eastney, says: ‘There used to be a time I didn’t want to acknowledge the scleroderma and didn’t even want to talk about it.
‘But now, having met Harmony and realising I’m not alone, I really want to raise awareness because so few people actually know what scleroderma is.
‘So we want to start talking about scleroderma and have organised some events to raise money for charity too.’ Living with scleroderma is a daily battle for the women.
They wake in the morning aching and in pain and then throughout the day they are riddled with weakness.
Harmony, a learning support assistant, was diagnosed with scleroderma when she was 17. She says: ‘I am tired all the time and I ache.
‘As well as that I have problems with my organs. I mainly get it with my oesophagus, where it can’t contract properly because of the scleroderma and so I struggle eating and swallowing. It’s also affected my whole digestive system as well and I’ve ended up in hospital with it.
‘You ache when you wake up with it, then you ache throughout the day.’
Julie adds: ‘Everything hurts all the time but you get used to it and once you’ve had a it a few years, you just put up with it.
‘You have good days and bad days but we refuse to let it take control of our lives so you just ride out the pain and try and get on with things. You’ve got to.’
Scleroderma is not curable but can improve and go into remission.
But it can also go the other way and get progressively worse and start to affect more of the body.
For those with the disease, living with the uncertainty of how it will progress can be the biggest challenge.
Harmony says: ‘When I first got diagnosed I looked up scleroderma online and some sites were saying you’d have about 10 years from diagnosis. It was quite scary.
‘There is a real uncertainty with the disease. You don’t know if or when it’s going to start affecting other organs like your lungs or even your heart. And you don’t know if you’ll be here in five years time, or five months even.’
World Scleroderma Awareness Day takes place tomorrow and both Julie and Harmony are taking the opportunity to finally talk about their disease and raise awareness.
Harmony is doing a 3km skate around Portsmouth, starting at the Historic Dockyard at 5pm. It will be a huge physical challenge because of the scleroderma.
Meanwhile Julie has planned a live music night at the pub she works at, the RMA Tavern in Cromwell Road, Eastney, from 6pm to 11.30pm. Everyone is invited and it is £1 entry, with donations welcome during the night. Both women will be raising money for the Scleroderma Society, based in Chichester, which promotes awareness among the public and medical profession to encourage early diagnosis. It also supports people with the disease.
To sponsor Harmony visit justgiving.com/harmony-hart or email MyOwn_SweetSelf@hotmail.co.uk. To sponsor Julie visit justgiving.com/julie-toghill.
· For more information contact The Scleroderma Society on 0800 311 2756, email firstname.lastname@example.org or visit sclerodermasociety.co.uk.