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Help Dealing with Sickle Cell Anemia
Hello everyone, I have had sickle cell anemia my entire life. I used to go the hospital very often, but now I only go about twice a year to be admitted. I have; through research, asking around and other such things; found different ways to deal with the pain of my disease. To avoid pain: Wrap
Hello everyone, I have had sickle cell anemia my entire life. I used to go the hospital very often, but now I only go about twice a year to be admitted. I have; through research, asking around and other such things; found different ways to deal with the pain of my disease. To avoid pain: Wrap
Anzy
in
Sickle Cell Society
12 years ago
What an amazing week!
Well, on top of the article in the Daily Mail that has caused our phones to practically melt (140 calls since Tuesday), we have got even more excitement to report. Lord Wills, who has taken up the cause of Giant Cell Arteritis and the tragedy of sight loss that it can cause, has managed to get the
Well, on top of the article in the Daily Mail that has caused our phones to practically melt (140 calls since Tuesday), we have got even more excitement to report. Lord Wills, who has taken up the cause of Giant Cell Arteritis and the tragedy of sight loss that it can cause, has managed to get the
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
Daily Mail features Giant Cell Arteritis
Now, the Daily Mail isn't normally my favourite newspaper, but today it definitely is. The Mail has published a long and really good feature on Giant Cell Arteritis, the tragedy of people who lose their sight because of it not being diagnosed, and the scandal of doctors who don't see what is right in
Now, the Daily Mail isn't normally my favourite newspaper, but today it definitely is. The Mail has published a long and really good feature on Giant Cell Arteritis, the tragedy of people who lose their sight because of it not being diagnosed, and the scandal of doctors who don't see what is right in
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
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AMN/Mystery disease
I am computer challenged! I am like a cave woman in training in this computer/technological world! FYI, I have, never, ever done a blog, before! I am suffering from AMN, big time, and would love some help!!! I KNOW THAT I COULD BE OF HELP AND YOU COULD BE OF HELP TO ME! I have an amazing story
I am computer challenged! I am like a cave woman in training in this computer/technological world! FYI, I have, never, ever done a blog, before! I am suffering from AMN, big time, and would love some help!!! I KNOW THAT I COULD BE OF HELP AND YOU COULD BE OF HELP TO ME! I have an amazing story
relay
in
AMN EASIER
12 years ago
I NEED HELP
It was a surprise to know that 15,000 babies are born yearly in ghana with sickle cell disease and 45,000 in Africa as a whole. Sickle cell disease cant be cured but can by avoided. This is when a person gets to know his or her status and choose the right partner. Here in Ghana, people dont check for
It was a surprise to know that 15,000 babies are born yearly in ghana with sickle cell disease and 45,000 in Africa as a whole. Sickle cell disease cant be cured but can by avoided. This is when a person gets to know his or her status and choose the right partner. Here in Ghana, people dont check for
quasi
in
Sickle Cell Society
12 years ago
A great source of information on treatment of Sickle Cell in the UK
Many of you are probably aware of NHS Choices as resource for information about Sickle Cell Disorders, but if you aren’t you can find a basic overview here: http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx . It provides an overview of the disorders, as well as going more in depth
Many of you are probably aware of NHS Choices as resource for information about Sickle Cell Disorders, but if you aren’t you can find a basic overview here: http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx . It provides an overview of the disorders, as well as going more in depth
CarlottaO
Sickle Cell Society
in
Sickle Cell Society
12 years ago
Crisis but only sickle cell trait?
I am a 44 year old lady and have been told iam sickle cell trait for many years now. what i need to know is could i still get a crisis as i ended up in hospital recently with stomach pain and ended up having my appendix taken out. However when this was done they were perfectly normal. I have had various
I am a 44 year old lady and have been told iam sickle cell trait for many years now. what i need to know is could i still get a crisis as i ended up in hospital recently with stomach pain and ended up having my appendix taken out. However when this was done they were perfectly normal. I have had various
karengr1
in
Sickle Cell Society
12 years ago
Do you have Polymyalgia Rheumatica or Giant Cell Arteritis? Are you still working?
Doctors tend to think of PMR and GCA as diseases of later life, but people in their 50s get these conditions too. For many, there is a need to carry on working in spite of having a long-term condition. What kind of work do you do, and how have you had to adjust your working life to cope with PMR and
Doctors tend to think of PMR and GCA as diseases of later life, but people in their 50s get these conditions too. For many, there is a need to carry on working in spite of having a long-term condition. What kind of work do you do, and how have you had to adjust your working life to cope with PMR and
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
Has anyone had a stem cell transplant for their scleroderma?
onthemend
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
home neb machine
Hi, I have a friend with a 9 year old with asthma due to XLP damage to his chest and they need to buy a home neb machine for him for when his chest is really bad. Recently he had to go into hospital overnight for saline neb which helped but his parents have never been offered advice re buying a machine
Hi, I have a friend with a 9 year old with asthma due to XLP damage to his chest and they need to buy a home neb machine for him for when his chest is really bad. Recently he had to go into hospital overnight for saline neb which helped but his parents have never been offered advice re buying a machine
Hidden
in
Asthma Community Forum
16 years ago
Bone Marrow Transplants
I know this is off topic, but I think it is something that is really important. Adrian Sudbury started a petition to make it compulsory for kids to learn about bone marrow and plateleys donation. He's trying to get to 10,000 signitures by the 23rd of this month! Give him a hand people! http://petitions.pm.gov.uk
I know this is off topic, but I think it is something that is really important. Adrian Sudbury started a petition to make it compulsory for kids to learn about bone marrow and plateleys donation. He's trying to get to 10,000 signitures by the 23rd of this month! Give him a hand people! http://petitions.pm.gov.uk
Hidden
in
Asthma Community Forum
16 years ago
Is it life changing?........
Cancer has touched a number of family members throughout my life - not that long at 44, but it really affected me most when my Mother was diagnosed at 50 and died at 51. I must admit, it had a pretty profound affect on me and my family and although it was over 15 years ago it still remains with
Cancer has touched a number of family members throughout my life - not that long at 44, but it really affected me most when my Mother was diagnosed at 50 and died at 51. I must admit, it had a pretty profound affect on me and my family and although it was over 15 years ago it still remains with
PeterThomas
in
Tenovus
13 years ago
Hi.I have had WG for just over 4 years now. I have been on Rhituximab for just
over a year and I have been told that I will probably need to have a bone marrow transplant. Has anyone else needed this procedure for WG. Any information would be greatly appreciated. Thanks.
over a year and I have been told that I will probably need to have a bone marrow transplant. Has anyone else needed this procedure for WG. Any information would be greatly appreciated. Thanks.
jimny
in
Vasculitis UK
13 years ago
Welcome to our new community!
Hi I'm Kate Gilbert and I'm the Chair of PMRGCAuk. We are delighted to be collaborating with HealthUnlocked on this new community This charity has only been going for a couple of years, but we are already making a difference to the lives of people with polymyalgia rheumatica and giant cell arteritis
Hi I'm Kate Gilbert and I'm the Chair of PMRGCAuk. We are delighted to be collaborating with HealthUnlocked on this new community This charity has only been going for a couple of years, but we are already making a difference to the lives of people with polymyalgia rheumatica and giant cell arteritis
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
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