tag:blogger.com,1999:blog-29307577475375922692024-02-07T17:01:16.071-08:00Evans Syndrome ukAnonymoushttp://www.blogger.com/profile/02673141953998717282noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2930757747537592269.post-38814030747674610032015-04-17T12:07:00.003-07:002015-04-17T12:07:58.652-07:00Our New WebsiteThe Evans Syndrome UK Bert's Awareness website is.<br />
www.evanssyndromeuk.org.ukAnonymoushttp://www.blogger.com/profile/02673141953998717282noreply@blogger.com0tag:blogger.com,1999:blog-2930757747537592269.post-34371866490352112932012-04-27T10:25:00.000-07:002014-09-18T12:51:22.791-07:00<span style="background-color: black;"><span style="color: white;"><br /></span></span>
<span style="background-color: black; color: white;">ALBERT Wirth always considered himself to be healthily robust. Up until three years ago the 58-year-old former <a href="http://www.dailypost.co.uk/news/north-wales-news/#" id="_GPLITA_0" style="text-decoration: underline;" title="Powered by Text-Enhance">delivery driver</a>
liked to unwind by lifting weights at the gym. Strong, fit and employed
in a job he loved, little did he realise that his world was about to be
turned upside down.</span><br />
<span style="background-color: black; color: white;">The only indication there was anything wrong was a need for him to
have regular B12 injections to treat a vitamin deficiency. When his leg
started to swell after a few months on the injections, he went to see
his GP who took a blood test.</span><br />
<span style="background-color: black; color: white;">That same day, as he headed back to work, he received an urgent call
from the surgery. Albert, of Abergele, said: “My doctor told me to go
straight to the hospital for more blood tests.”</span><br />
<span style="background-color: black; color: white;">When he protested, the doctor more or less told him that if he
didn’t it could be a matter of life or death. The blood test revealed
that the platelet levels in his blood were at dangerously low levels.
“My platelet count was 4,000. The average count is anywhere between
150,000-400,000,” he said.</span><br />
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<span style="background-color: black; color: white;">After six weeks in the Arrowe Park Hospital on Merseyside, doctors
confirmed that he had a rare blood disorder called Evans Syndrome. There
is no known cure, the medical community have yet to discover a specific
cause – and it can be fatal.</span><br />
<span style="background-color: black; color: white;">Evans Syndrome is an auto immune disorder in which the <a href="http://www.dailypost.co.uk/news/north-wales-news/#" id="_GPLITA_1" style="text-decoration: underline;" title="Powered by Text-Enhance">body</a> makes antibodies that destroy bloods cells – red, white and platelets.</span><br />
<span style="background-color: black; color: white;">In Albert’s case it was the platelets that were being attacked – a condition called Thrombocytopenia. This
leaves him susceptible to internal and external bleeding, from the gums
and nose, blood blisters in the mouth and down the back of his throat.
The slightest knock could lead to an internal bleed with potentially
fatal consequences.</span><br />
<span style="background-color: black; color: white;">Those six weeks in hospital proved to be the toughest in his life.
Looking back at that time, he said: “It was very scary not knowing
initially what was wrong and what was going on. I had endless blood
tests – so many that one of my veins collapsed – and various types of
treatment, including steroids and a couple of doses of chemotherapy
which didn’t work.</span><br />
<span style="background-color: black; color: white;">“My gums and nose started to bleed, I was spitting out blood clots. I
also had a platelet rash which are small red spots on the skin all over
my body.”</span><br />
<span style="background-color: black; color: white;">One treatment which worked for a time was a platelet boosting drug
called Romiplostim. “It helped in some ways in getting rid of the spots
and made me feel a bit better, but they didn’t raise my platelets enough
to carry them on which is a shame.”</span><br />
<span style="background-color: black; color: white;">In the end, while the worst of his symptoms eased, they could not
find a cure. He was allowed home but had to go back to hospital every
second day to monitor his condition.</span><br />
<span style="background-color: black; color: white;">Three years on and that has stabilised to fortnightly trips to
Merseyside for blood tests and monthly visits to see his consultant,
excluding emergency visits to Ysbyty Glan Clwyd, Bodelwyddan to stem his
regular bleeds and a dizzying array of complications he has developed
since his diagnosis. These include five mini-strokes, heart failure,
osteoporosis and diabetes.</span><br />
<span style="background-color: black; color: white;">Life has got better but in a sense he feels he has only been give a
stay of execution. “It is like having a death sentence hanging over my
head,” he said.</span><br />
<span style="background-color: black; color: white;">That uncertainty about his future has had a corrosive effect at
times on family life. Albert, or Bert as he is known to wife Amanda, has
two children at home Callum, 15, and Sarah 18 . The couple also have
four grown-up children between them.</span><br />
<span style="background-color: black; color: white;">The hardest part of living with Evans Syndrome is the impact it has had on his relationship with his two young
children. “There are times when I get down and grumpy with the kids.
Callum used to like to play fight and he gets upset that I can’t do that
anymore. It’s the little things like not being able to take them out.
The boy has a fishing rod but I can’t even go out and do that with him.”</span><br />
<span style="background-color: black; color: white;">There are times when this has left him in a dark place, but
overall he has been determined to remain positive about his plight. “I
like to have a laugh at life. While I know this has been a nightmare, not just for me but the family, I am trying really hard to stay positive.”</span><br />
<span style="background-color: black; color: white;">His outlook may be positive but he is also realistic about living with an incurable, potentially fatal disorder.</span><br />
<span style="background-color: black; color: white;">“The truth is no-one knows too much about what triggers the disease,
and so far there is no cure. Some people go into remission but that is
usually children who have developed the disease. At times my platelet
levels have been close to zero and when my nose bleeds the blood just
oozes out.</span><br />
<span style="background-color: black; color: white;">“I always have my notes with me in case I’m taken into
hospital. I can’t do any exercise as such and I can’t even go swimming.
If you use your muscles too much it can lead to internal bleeding. I
have had five mini-strokes and a bleed on the brain. I get out on my
mobility trolley and do what I can but that is not a lot.”</span><br />
<span style="background-color: black; color: white;">He says this with a laugh and the key to his survival over the
last few years has been keeping his sense of humour. “I take every day
as it comes but at the moment all I can hope for is that it will get
better.”</span><br />
<span style="background-color: black; color: white;">His wife Amanda has been there at his side throughout the last three
years offering her unstinting support. She said: “It’s a horrible
disease and we want to raise more awareness of it so that more research
can be done to find out what causes it and to find a cure.</span><br />
<span style="background-color: black; color: white;">“Bert has recently been to see a herbalist and that has helped ease
some of his symptoms and given him and us a little bit of hope. But it
has had a devastating effect on the family.</span><br />
<span style="background-color: black; color: white;">“It’s the uncertainty of it all. When someone is diagnosed with a
disease like cancer, it’s horrible of course, but people can plan for
some kind of future. Bert could have a major bleed and die today.”</span><br />
<span style="background-color: black; color: white;">That is why she is in the process of setting up a support group for
other families in the UK affected by the syndrome. She has created a
Facebook page called Evans Syndrome UK where people can get in touch.
She is also organising a walk from Pensarn to Llandudno on March 31. To
take part can call her on 07595702010.</span><br />
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Anonymoushttp://www.blogger.com/profile/02673141953998717282noreply@blogger.com1tag:blogger.com,1999:blog-2930757747537592269.post-89705093230968191772012-03-18T13:10:00.001-07:002014-09-18T12:51:59.977-07:00about platelet rash<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHODmMB2-DBvy2L5lLjZz8_TcaaAKn0yXayr0gszPCbGkOdcI96iuUiTiekA4WoeEJDrWkonzxxzSV1leoPRUHeriX8K2dB0o8gGnk_cgOGwjvGHbyWHhJuVOaezAR8r451hHmkocRmok/s1600/230px-Purpura.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHODmMB2-DBvy2L5lLjZz8_TcaaAKn0yXayr0gszPCbGkOdcI96iuUiTiekA4WoeEJDrWkonzxxzSV1leoPRUHeriX8K2dB0o8gGnk_cgOGwjvGHbyWHhJuVOaezAR8r451hHmkocRmok/s1600/230px-Purpura.jpg" /></a></div>
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<span style="background-color: black;"><span style="color: white;">The platelet rash is on the skin and u can get the anywere on ur body and</span></span><br />
<span style="background-color: black;"><span style="color: white;">it is NOT nice for people who has got the rash. The blood blisters are like</span></span><br />
<span style="background-color: black;"><span style="color: white;">the size of a pin head and sometimes the person who has got it cant stop</span></span><br />
<span style="background-color: black;"><span style="color: white;">scratching and when they scratch the rash it starts bleeding. </span></span><br />
<br />Anonymoushttp://www.blogger.com/profile/02673141953998717282noreply@blogger.com0tag:blogger.com,1999:blog-2930757747537592269.post-42528432138651468012012-03-18T12:38:00.000-07:002014-09-18T12:52:15.284-07:00what's evans syndrome<u><span style="background-color: black; color: white; font-size: large;">What is Evans Syndrome </span></u><br />
<span style="background-color: black; color: white;"> Evans syndrome was first described in 1951, is a rare blood disorder which</span><br />
<span style="background-color: black; color: white;"> occurs in both children and adluts. The cause is unknown. What is known</span><br />
<span style="background-color: black; color: white;">is that the body makes antibodies that destroy either red blood cells, white</span><br />
<span style="background-color: black; color: white;">blood cells, platelets or three. Patientsare diagnosed with thrombocytopenia</span><br />
<span style="background-color: black; color: white;">(low platelets) and coomb's positive haemolytic anaemia and have no other known</span><br />
<span style="background-color: black; color: white;">underlying cause. Thereis no cure</span><br />
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<u><span style="background-color: black; color: white; font-size: large;">Indicators of evans syndrome </span></u></div>
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<span style="background-color: black; color: white; font-size: large;"><u>haemolytic anaemia</u> </span></div>
<span style="background-color: black; color: white; font-size: small;">Low red blood cells, Weakness Fatigue,Shortness of breath.</span><br />
<span style="background-color: black; color: white; font-size: small;">Symptom relating to anaemia low white blood cells </span><br />
<span style="background-color: black; color: white; font-size: small;">Susceptible to infections difficulty in fighting infections.</span><br />
<span style="background-color: black; color: white;"><br />
<u><span style="font-size: large;">Idiopathic thrombocytopenic </span></u></span><br />
<u><span style="background-color: black; color: white; font-size: large;">purpura (Low platelets)</span></u><br />
<span style="background-color: black; color: white; font-size: small;">they are susceptible to bleeding from the gums, nose also </span><br />
<span style="background-color: black; color: white; font-size: small;">from minor bumps to the boby can cause internal bleeding or </span><br />
<span style="background-color: black; color: white; font-size: small;">bruising, they also get blood blisters in the mouth and down the throat,</span><br />
<span style="background-color: black; color: white; font-size: small;">platelet rash on the skin they are little red spots size of a pin head. </span>Anonymoushttp://www.blogger.com/profile/02673141953998717282noreply@blogger.com1