pemphigus.org.uk Report : Visit Site


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    The main IP address: 185.119.172.152,Your server -,- ISP:-  TLD:uk CountryCode:-

    The description :website of the pemphigus vulgaris network, the united kingdom support group for people living with pemphigus and mucous membrane pemphigoid....

    This report updates in 17-Aug-2018

Created Date:2004-03-01
Changed Date:2017-02-22

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Content-Length:41099
Accept-Ranges:bytes
Keep-Alive:timeout=5, max=100
Server:Apache
Last-Modified:Mon, 13 Apr 2015 11:49:06 GMT
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Date:Fri, 17 Aug 2018 05:58:24 GMT
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DNS

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ns:ns38.qnop.net.
ns39.qnop.co.uk.
ipv4:IP:185.119.172.152
ASN:198047
OWNER:UKWEB-EQX, GB
Country:GB
mx:MX preference = 0, mail exchanger = mail.pemphigus.org.uk.

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welcome to the website of the , the united kingdom support group for people living with pemphigus and mucous membrane pemphigoid. this page includes the following sections: what is pemphigus vulgaris? what is the pv network? how is pv diagnosed? how is it treated? will it go away? get involved - the walk for skin -- types of pemphigus complementary medicine faqs clinical trials, new treatments and research how to find out more clinical trial in the uk -- it is with great sadness that we must report the passing of siri lowe, who founded the pv network and ran it for 15 years. siri was a great help and support to us, and will be sadly missed. what is pemphigus vulgaris? pemphigus vulgaris (pv) is one of a group of rare, relapsing auto-immune diseases causing blistering of the skin and mucous membranes (eg mouth, nose, throat and genitals). in pemphigus disorders the immune system makes a mistake, views cells in the skin and mucous membranes as foreign and an immune response is triggered. affected individuals have high concentrations of antibodies produced by the immune system. these bind to a specific protein in the skin (desmoglein 3 and sometimes desmoglein 1), causing interference with the skin's normal function. the cells no longer stick together and become separated from each other. this causes the burn-like lesions or blisters that are typical of pv. symptoms often occur first in the mouth, but lesions can cover a significant area of skin. the disease is non-infectious. although it is known that desmoglein antibodies cause pv, it is not known why people develop these autoantibodies in the first place. genetic factors are believed to be important but it is likely that there are other factors which help trigger pv. what is the pv network? the is a voluntary, not-for-profit, group started in 1997 to provide information and support for people living with pemphigus and their relatives, friends and carers. we also provide an information resource for doctors and other medical professionals. we are part of the british association of dermatologists' patient support group organisation and are members of the skin care campaign, national voices (previously called the long-term conditions alliance), and the all party parliamentary group on skin. we are entirely unfunded and rely on donations. if you find this website useful and would like our work to continue, we would appreciate any donations (howevever small). cheques should be made out to the and sent c/o 14 lime court, gayton rd, harrow ha1 2yd. contact information for the pv network is given at the end of this page. what can we offer you? in general, we find the best way we can help is if you also have a look at the international pemphigus and pemphigoid foundation website and then see if you have any further questions or if there is anything you want clarified. usually a phone call is the best way to talk through things you're wondering about. sometimes people want to talk to another person with pemphigus just to share a common experience. if we do not know the answer to a question, we'd hope to suggest ways you could find out. we leave it up to individuals to contact us as and when it suits them. but if anyone ever wants any current news about what is happening in the uk, just phone us up and we'll tell you about current work, ongoing projects etc. owing to lack of resources, we do not organise get-togethers but leave that up to individuals to organise themselves (we have a list of members who are happy to be contacted by anyone with pemphigus). how is pemphigus vulgaris diagnosed? pemphigus vulgaris is rare and most general practitioners (gps) have never seen it. so it's essential the diagnosis of pv is made by a dermatologist (a hospital doctor specialising in skin conditions) or another medical specialist in dealing with pv. early diagnosis is important because the sooner you get treated the sooner you can start to feel more comfortable before it becomes too severe. there are three things which might suggest pv: a visual examination by a dermatologist. a lesion biopsy - a sample of an unbroken blister is removed and examined under the microscope. direct immunofluorescence - the biopsy skin sample is treated in the laboratory to find the pv antibodies which indicate pv. there is another useful test called indirect immunofluorescence (sometimes called an antibody titre test). this measures pv antibody levels in the blood. the most accurate test to measure pv antibodies in the blood is called the elisa test but it is not available in all laboratories. it measures the level of antibodies in the blood (titre). this is useful for monitoring how active the pv is, which might mean changes in your treatment and therapy. people may not be aware that several new government initiatives are being introduced in england which may affect their access to dermatology hospital care. in particular "clinical assessment and treatment services" (cats) is a scheme by which primary care trusts (ie gp practices) aim to reduce referrals to secondary care (ie hospitals). this works by re-routing referrals back into a primary care facility, probably a clinic run by gps with special interest in dermatology. when pemphigus vulgaris is known to be the diagnosis, the dermatology guideline is that a patient should be seen at a hospital by a dermatology consultant. however, it may become difficult to see a dermatology consultant in the first place to get a correct diagnosis and confirming tests. so, if pemphigus is suspected you may have to insist that you are initially sent to a hospital, rather than to another gp in a community dermatology clinic. great changes are being introduced to the nhs in the near future. in some parts of the country changes about commissioning are already happening as primary care trusts are disbanded. most pemphigus patients feel strongly that they want their care to take place in a hospital setting, usually a dermatology department but sometimes an oral medicine department. this is because pemphigus, even when seemingly stable and controlled, can flare suddenly and it is much quicker to get things under control if you're already a hospital patient than if you have to wait for your gp to refer you back to your original hospital consultant. if there are exceptional circumstances where a stable pemphigus patient is being looked after in a community setting, for example if the nearest hospital department is too far to travel to, their care should still be under the supervision of a dermatology (or oral medicine) consultant. how is it treated? there is no specific cure available, but the condition is controllable with heavy immunosuppressive treatment. the standard treatment is with corticosteroids , which are often started at high doses (eg. 60-100mg per day), together with immunosuppressive drugs (azathioprine, cyclophosphamide, mycophenolate mofetil, cyclosporin, methotrexate). other treatments sometimes used are: dapsone; gold injections; tetracycline, minocycline or doxycycline combined with niacinamide; plasmapheresis (plasma exchange); intravenous immunoglobulin (ivig). both plasmapheresis and ivig treatment are only used in rare instances. treatment is generally started with prednisolone and immunosuppressant tablets. in cases where this is not sufficient to control the pemphigus, intravenous methylprednisolone plus cyclophosphamide is another option that may be used. this is called pulsed therapy and is administered by a drip, usually during out-patient visits. pulsed therapy is a lengthy process, probably three days per month for at least six months to a year, sometimes longer. a new group of medicines called biologics are being developed by a number of pharmaceutical companies. rituximab is a biologic (used to treat non-hodgkin’s lymphoma). some consultants are now using it for hard to control cases of pemphigus vulgaris (see ‘clinical trials, new treatments and research’) this is a relatively new

URL analysis for pemphigus.org.uk


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Whois Information


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Domain name:
pemphigus.org.uk

Registrant:
PV Network

Registrant type:
Unknown

Registrant's address:
Flat C
26 St Germans Road
London
London
SE23 1RJ
United Kingdom

Data validation:
Nominet was not able to match the registrant's name and/or address against a 3rd party source

Registrar:
TUCOWS Inc t/a TUCOWS [Tag = TUCOWS-CA]
URL: http://www.tucowsdomains.com

Relevant dates:
Registered on: 01-Mar-2004
Expiry date: 01-Mar-2018
Last updated: 22-Feb-2017

Registration status:
Registered until expiry date.

Name servers:
ns1.tsohost.co.uk 195.62.28.14
ns2.tsohost.co.uk 95.142.155.4
ns38.qnop.net
ns39.qnop.co.uk 95.142.155.4

WHOIS lookup made at 21:02:33 12-Aug-2017

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  REFERRER http://www.nominet.org.uk

  REGISTRAR Nominet UK

SERVERS

  SERVER uk.whois-servers.net

  ARGS pemphigus.org.uk

  PORT 43

  TYPE domain

OWNER

  ORGANIZATION PV Network

TYPE
Unknown

ADDRESS
Flat C
26 St Germans Road
London
London
SE23 1RJ
United Kingdom
Data validation:
Nominet was not able to match the registrant's name and/or address against a 3rd party source

DOMAIN

  SPONSOR TUCOWS Inc t/a TUCOWS [Tag = TUCOWS-CA]

  CREATED 2004-03-01

  CHANGED 2017-02-22

STATUS
Registered until expiry date.

NSERVER

  NS1.TSOHOST.CO.UK 195.62.28.14

  NS2.TSOHOST.CO.UK 95.142.155.4

  NS38.QNOP.NET 185.52.27.27

  NS39.QNOP.CO.UK 95.142.155.4

  NAME pemphigus.org.uk

DISCLAIMER
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for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
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register. Access may be withdrawn or restricted at any time.

  REGISTERED yes

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