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Exeter woman who has two terminal illnesses is unable to treat either - because it would kill her

By Western Morning News  |  Posted: April 11, 2014

  • Jo Smith from Exeter (right) who suffers from pulmonary hypertension and lymphatic cancer pictured with her friend and fundraiser Sarah Lacey .

  • Jo Smith from Exeter

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An Devon woman is locked in a deadly Catch 22 situation as she is the only person in the world with two rare terminal conditions - as treating one means the other would kill her.

Jo Smith, 36, has a unique combination of diseases and doctors say the odds of suffering both is over five billion to one.

Jo needs a heart and lung transplant to have any hope of beating the blood vessel disorder pulmonary hypertension (PH).

But doctors say she can't be put on a waiting list for the lifesaving organs - because she's also suffering from cancer.

Similarly, the radiotherapy that could cure her lymphatic cancer cannot be performed because her weakened lungs and heart would likely fail.

But because she hasn't been able to have radiotherapy Jo looks a picture of health with her radiant skin and long blonde hair.

She said: "I've always been quite a positive person. I've never let it impact on my life. But it's becoming impossible now - it's starting to effect everything I do.

"It's devastating, but I have to deal with it. I have my little son to take care of. He takes my mind off things.

"I've only recently told him, I've had to tell him so he understands why I can't run after him.

"He tries to care for me, he's so sweet, he'll come and give me a little pat on the back and stroke my hair and asks me when I'll get better."

With two illnesses competing to kill her Jo's only hope is a new form of immunotherapy treatment only available in Thailand.

Jo hopes the pioneering therapy can cure her cancer and stop the advancement of the PH without leaving three-year-old son Rudey without a mum.

But with both conditions simultaneously attacking her body her family friends have challenged themselves to raise the #30,000 she needs for treatment in just 30 days.

Jo, of Exeter, Devon, first noticed she was becoming tired and and drained of energy six months after giving birth to son Rudey in October 2010.

She went to the doctors complaining that she was suffering stabbing chest pains and was too exhausted to change nappies, walk up stairs or make the bed.

Jo, an English graduate, was diagnosed with PH, an incurable degenerative disease caused by increased blood pressure that narrows or destroys the pulmonary arteries.

In severe cases, it damages the right side of the heart, making it increasingly difficult to pump blood and oxygen and leading to eventual heart failure.

Devastated Jo was told not to have another child because the stress of pregnancy would likely kill her and the baby.

But worse news was to follow in 2011 when a routine scan revealed a huge tumour beside her kidneys.

To her horror, Jo was diagnosed a cancer of the lymphocytes, a type of white blood cell that fights infection in the body.

Cancer specialists wanted to prescribe her immediate radiotherapy - but the specialists treating Jo for PH vetoed the gruelling treatment because it could kill her.

Instead, she was offered an operation to have the tumour removed by surgeons at London's Hammersmith Hospital, a operation which she was given a 50/50 chance of survival.

After agonising for a year she had an op but without the radiotherapy she cannot halt the progress of smaller cancers circulating her lymphatic system.

Jo said: "The doctors weren't expecting this, and I wasn't expecting to hear this. We hoped the operation would at least have had some sort of positive impact.

"But if anything, the impact of such a massive operation made it worse. I didn't want to take any more risks, the operation was enough of a risk.

"If it was just me, I may have felt differently, but I'm a mum, I couldn't compromise my survival."

A heart and lung transplant could treat Jo's PH but that would not be sanctioned by the NHS because she has cancer and would likely die.

Jo would have to be cancer-free for five years to qualify for donor organs.

Instead she will seek out the expertise of doctors at the 'The Better Being Hospital' in Bangkok who specialise in alternative "functional" medicine.

Their experts combat chronic illnesses though a combination of conventional medicine as well as nutrition, diet, exercise, supplements and detoxification programs.

Jo's treatment would take 45 days with an added 20 days of home therapy.

And with her life threatened by twin deadly threats, Jo, who ran her own dog walking company before becoming a full-time mum, is desperate to get started.

Jo's best friend Sarah Lacey is teaming up with the singer Adam Isaac, a former quarter-finalist on BBC's The Voice, to put on a music festival called Breathe Fest to raise the funds.

Breathe Fest is taking place at Northernhay Gardens in Exeter on Friday, July 11, and Saturday, July 12.

Tickets and more information will be available when the event website goes live in the coming days, at www.breathefest.com.

Or for more info visit www.facebook.com/events/468721939926862/

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  • Guy_Chapman  |  July 07 2014, 12:16AM

    For those readers unaware of what "functional medicine" is, here's an article on Wikipedia: https://en.wikipedia.org/wiki/Functional_medicine Put simply, it's delusional nonsense. Minchin's Law states that alternative medicine, by definition, either hasn't been proven to work, or has been proven not to work. The name for alternative medicine that has been proven to work is: medicine. In the UK we have the Cancer Act 1939, which protects vulnerable people from predatory quacks. Thailand has no such law, with the result we see here.

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