Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Girl With POTS given Octreotide with Success

Discussion in 'Other Health News and Research' started by Glynis Steele, Jun 23, 2011.

  1. Glynis Steele

    Glynis Steele Senior Member

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    Newcastle upon Tyne UK
    A student with a rare condition that caused her to faint every time she stood up over 14years is finally back on her feet. Lizzie Rees, 22, suffers from postural orthostatic tachycardia syndrome (POTS), which affects the body's ability to adjust to the pull of gravity.

    The condition causes her heart rate to speed up whenever she stands, causing her to pass out up to five times a day.

    Even getting up from a chair would cause her to collapse and she often had to crawl around on her hands and knees or use a wheelchair.

    But after countless medical experts failed to cure the problem she is finally enjoying a normal life after a heart specialist prescribed a drug to control her blood flow.
    Miss Rees, from Bristol, said: 'I would pass out up to five times a day and was constantly getting injured banging my head and have to go off to A&E.

    'I have seen cardiologists and doctors of pretty much every speciality going, but it is great to know that this is treatable.

    'I remember feeling so much better after I started treatment. I still pass out occasionally but going to college now shows how far I have come.'
    POTS is a form of dysautonomia - an abnormal functioning of the Autonomic Nervous System (ANS), which controls many subconscious bodily functions including breathing and balance.

    When the average person stands their blood pressure drops slightly but the ANS recognises this and causes their heart rate to momentarily increase.

    But in POTS patients, their blood pressure plummets when they stand, causing the heart to race. Blood supply is not able to reach the brain quickly enough, resulting in dizziness, vision loss and fainting.

    Lizzie inherited a genetic condition which left her more susceptible to POTS and it was triggered by an infection she picked up at the age of eight.

    But the age of 12 she was unable to even sit up in bed and was admitted to hospital for 14 months as doctors sought a cure.

    Lizzie missed school completely between the age of 11 and 16 because she was unable to stand. By her late teens the condition briefly improved and she was able to take a job as a part-time care assistant at 18.

    Lizzie, who has spent most of her life getting around in a wheelchair, said: 'I have seen cardiologists and doctors of pretty much every speciality going but no one could figure it out. 'I spent three years in hospital in total, including 14 months at the children's hospital, bed-bound in a darkened room, fed by a tube.

    'Fortunately I have had the support of my family and some very good friends.'

    But last September Lizzie was referred to Glyn Thomas, a consultant cardiologist and cardiac electrophysiologist at the Bristol Heart Institute.

    After extensive tests he prescribed daily injections of the drug octreotide, which increases her blood pressure and prevents her passing out.

    Her condition improved so much she has started an arts therapy college course at City of Bristol College. Getting around: Lizzie Rees was often confined to a wheelchair to stop her from fainting. She said: 'I almost didn't turn up for my appointment with Dr Thomas because I have seen so many people before and had not got anywhere, but it was so refreshing to see him.

    'I remember feeling so much better after I started treatment. I still pass out occasionally but going to college now shows how far I have come.'
    Lizzie is now fulfilling a long-term dream of attending the Glastonbury Festival.

    She has bought tickets every year since 2005 with the hope of being able to join her friends at the event but has had to rip up her ticket at the last minute.

    The medication she is using is not routinely funded by the NHS but doctors can apply for exceptional funding on their patients' behalf.

    It is thought that just a few hundred people worldwide suffer from the severe form of POTS such as Lizzie's.

    Her parents Corinne, 58, and Gareth, 61, both doctors, hope that hundreds of other POTS sufferers could now benefit.
    Christmas away from home: Lizzie spent 14 months bed bound in a children's hospital
    Corinne, a community paediatrician, said: 'It is huge, the heart institute have done a fantastic job, it is such a profound relief. She just wants to get on with her life.

    'It has made a considerable difference to her life, one the hospital trust can be proud of.

    'I think a core part of what they are doing is to recognise that POTS is a treatable condition and working to treat it.

    'A lot of factors contribute towards the condition, such as the right water and salt levels and increasing exercise to help with blood flow.

    'I would suspect they will find a lot of people out there who suffer to some extent who previously may not have fitted into a certain box and not been treated correctly. Hopefully this will change that.'


    http://www.dailymail.co.uk/health/a...llapsed-time-stood-finally-standing-tall.html

    Glynis x
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Did the hospital say the bp falls with POTS? POTS does not have to have low bp at all. That is a separate problem. Good she has improved.:D I did see this story on the UK POTSY site. They are a new group, nice they are there for the people in UK since we have so many POTSY groups here in the USA.
     

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