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| Neath family's £80k health bill for daughter's rare conditions | Neath family's £80k health bill for daughter's rare conditions |
| (35 minutes later) | |
| Parents of a Neath woman with a rare combination of illnesses said they have spent £80,000 for private treatment in London as there are no specialists in Wales. | Parents of a Neath woman with a rare combination of illnesses said they have spent £80,000 for private treatment in London as there are no specialists in Wales. |
| Hannah Amelia Evans, 27, could die if she catches a cold. | Hannah Amelia Evans, 27, could die if she catches a cold. |
| With a lack of specialist care in Wales for her complex needs, Ms Evans has to travel to a private clinic in London every few weeks. | With a lack of specialist care in Wales for her complex needs, Ms Evans has to travel to a private clinic in London every few weeks. |
| Her mother said: "You can't put a price on the life of your child". | Her mother said: "You can't put a price on the life of your child". |
| Two-years-ago Ms Evans, who already had Ehlers Danlos Syndrome (EDS), a Postural Orthostatic Tachychardic Syndrome (POTS), was diagnosed with mastocytosis, a rare and incurable condition which means the cells meant to protect her from outside threats mutate and start attacking her body instead, seriously affecting her immune system and increasing the risk of anaphylactic shock. | Two-years-ago Ms Evans, who already had Ehlers Danlos Syndrome (EDS), a Postural Orthostatic Tachychardic Syndrome (POTS), was diagnosed with mastocytosis, a rare and incurable condition which means the cells meant to protect her from outside threats mutate and start attacking her body instead, seriously affecting her immune system and increasing the risk of anaphylactic shock. |
| Due to the severity of her conditions she cannot be left alone and has to have someone with her at all times. She had to give up her job and is unable to get insurance. | Due to the severity of her conditions she cannot be left alone and has to have someone with her at all times. She had to give up her job and is unable to get insurance. |
| She also has to take 100 medications every day and district nurses call to her house to administer treatment from an IV drip into her body via a Hickman line which is attached to her chest. | She also has to take 100 medications every day and district nurses call to her house to administer treatment from an IV drip into her body via a Hickman line which is attached to her chest. |
| Her mother, Helen Harry, said: "Every time Hannah goes to London - because we have to buy the drugs as well as seeing the consultants, the blood tests - you're talking between £1,100 and £1,200 and that's every six to eight weeks. | Her mother, Helen Harry, said: "Every time Hannah goes to London - because we have to buy the drugs as well as seeing the consultants, the blood tests - you're talking between £1,100 and £1,200 and that's every six to eight weeks. |
| "Any additional investigations the NHS can't cover, we have to pay for them. Overall since Hannah was about 18 we've spent well over the £80,000 mark. You just can't put a price on the life of your child. | "Any additional investigations the NHS can't cover, we have to pay for them. Overall since Hannah was about 18 we've spent well over the £80,000 mark. You just can't put a price on the life of your child. |
| "The worry is, what happens when it runs out? Hannah's condition is currently incurable. We tend not to think of it like that. We just work it day by day, week by week and pay for it like that. You cash things in, we work harder, we fundraise harder." | "The worry is, what happens when it runs out? Hannah's condition is currently incurable. We tend not to think of it like that. We just work it day by day, week by week and pay for it like that. You cash things in, we work harder, we fundraise harder." |
| Aged 19, Ms Evans was diagnosed with EDS, a genetic condition which affects the body's connective tissue and causes painful dislocations. | Aged 19, Ms Evans was diagnosed with EDS, a genetic condition which affects the body's connective tissue and causes painful dislocations. |
| While at university her weight fell to 5st 7lbs (35kg) and she struggled to socialise, as her condition left her, at times, debilitated in bed. | While at university her weight fell to 5st 7lbs (35kg) and she struggled to socialise, as her condition left her, at times, debilitated in bed. |
| Then, about two years later she was diagnosed with POTS, a condition which means her body is unable to regulate its heart rate, blood pressure, body temperature and adrenaline, which can cause seizures. | Then, about two years later she was diagnosed with POTS, a condition which means her body is unable to regulate its heart rate, blood pressure, body temperature and adrenaline, which can cause seizures. |
| Due to her conditions a simple cold could be life-threatening to Ms Evans, and six-months before graduations Ms Evans fell ill and had to complete her dissertation from a hospital bed in London. | Due to her conditions a simple cold could be life-threatening to Ms Evans, and six-months before graduations Ms Evans fell ill and had to complete her dissertation from a hospital bed in London. |
| In the past she's also had a nose bleed which developed into pneumonia in both of her lungs and an ear infection which caused encephelitis. | |
| "Unfortunately during my first teaching job I caught measles and not realising the seriousness of the mast cell activation disorder (mastocytosis), I ended up in intensive care and well, I nearly died," she said. | "Unfortunately during my first teaching job I caught measles and not realising the seriousness of the mast cell activation disorder (mastocytosis), I ended up in intensive care and well, I nearly died," she said. |
| "I was on life support and all that came as a bit of a shock, because when I become ill my body will attack itself rather than fighting back." | "I was on life support and all that came as a bit of a shock, because when I become ill my body will attack itself rather than fighting back." |
| Despite her serious conditions Ms Evans remains upbeat and positive. | Despite her serious conditions Ms Evans remains upbeat and positive. |
| She now writes a blog and is trying to raise awareness of invisible illnesses and rare conditions. | She now writes a blog and is trying to raise awareness of invisible illnesses and rare conditions. |
| She said: "I do struggle, especially this time of year, to go out because I have to avoid the cold. I get so nervous and I know people say to me you shouldn't shut yourself away, but it's easier said than done when a simple cold could actually kill me. | She said: "I do struggle, especially this time of year, to go out because I have to avoid the cold. I get so nervous and I know people say to me you shouldn't shut yourself away, but it's easier said than done when a simple cold could actually kill me. |
| "When I go out with my mask on, I'll have my phone in my hand to avoid eye contact with people. It's a natural instinct for people to look, that doesn't bother me, but I do get a bit embarrassed because I think people believe I have the germs when in actual fact it's for my safety." | "When I go out with my mask on, I'll have my phone in my hand to avoid eye contact with people. It's a natural instinct for people to look, that doesn't bother me, but I do get a bit embarrassed because I think people believe I have the germs when in actual fact it's for my safety." |