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uk ​ ​ what is fd about us events donate info for doctors info for patients fd bodies screening contact more contact us are you or your friends travelling to the usa? donate this rosh hashanah view summer newsletter 2018 fd uk p. o. box 17679 london, nw4 1ws: email: [email protected] uk registered charity number 285399 webmaster login all information contained on the familialdysautonomia.co.uk website is intended for informational and educational purposes. the information is not intended nor suited to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical question or condition. we urge you to always seek the advice of your physician or medical professional with respect to your medical condition or questions. as a recipient of information from this website, you are not establishing a doctor/patient relationship with any physician. there is no replacement for personal medical treatment and advice from your personal physician. ​ to read our gdpr policy and privacy policies please click here ​ what is ? fd or (pronounced "dys-auto-nomia")is a genetic disease that affects male and female jewish babies, primarily causing dysfunction of the autonomic andsensory nervous systems. the autonomic nervous system controls bodily functions which are often taken for granted, such as: • regulation of blood pressure and body temperature. • normal swallowing and digestion. • ability to respond to stress. children with fd may drink fluids and be unaware that abnormal swallowing is misdirecting the fluid into thelungs, rather than the stomach, causing lung problems.sensory abilities are needed to protect the body from injuryby ensuring prompt recognition, so that proper treatmentcan be given. children with fd often do not feel pain and may break abone, or burn themselves, without any awareness of the injury. all fd people are different, here is janes story: ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ physical symptoms crying without tears is one of the most striking symptomsof fd.other symptoms which may be present are: • poor suck at birth, drooling or feeding problems. • hypotomia (poor muscle tone) or "floppy baby" signs. • delayed developmental milestones such as walking or speech. • inappropriate temperature control with very high feversor very low temperatures. • wide swings in blood pressure. • episodic vomiting. • frequent lung infections or pneumonias. • decreased reaction to pain, or no reaction at all. • poor weight gain or growth. • excessive sweating. • blotchy reddening of skin with excitement or eating. • cold hands and feet. • smooth tongue (diminished number of taste buds). • early spinal curvature i.e. scoliosis. intelligence is normal despite delays in walking and speech how is the disease inherited? it is estimated that one in thirty individuals of eastern european jewish ancestry is a carrier of the gene for fd. all parents of children with fd are carriers of the defective gene that transmits the disease. the affected child has inherited a double dose of the defective recessive gene, one from the mother and one from the father. a parent has no symptoms or warning signs of being a carrier. when two carriers marry there is a 25% chance with each pregnancy that the recessive genes will pair and produce fd in the child. thus the first clue for most individuals that they are carriers is the birth of a child with fd. fd gene is identified in 2001, the fd gene was identified by 2 research teams. there is now a prenatal diagnostic test for known carriers. lack of family history, however, is not a guarantee. we need to warn people that they might be carriers. how can you help • provide grants to fd children to obtain additional therapeutic treatment,medications and medical and other equipment they require, not provided by the nhs. • provide grants to fd children to travel abroad to obtain expert advice, diagnosis,treatment or surgery, when the same is not available in the uk. • provide grants for british speech therapists, physiotherapists and other health auxiliaries to go on advanced training programs in the treatment of fd. • provide grants for specialists from the dysautonomia centres in new york and israel to visit and lecture to medical specialists, therapists and nurses in london. • support the society's self-help group for fd families.

URL analysis for dsgb.org

https://www.familialdysautonomia.co.uk/information-for-doctors
https://www.familialdysautonomia.co.uk/information-for-patients
https://www.familialdysautonomia.co.uk/donate
https://www.familialdysautonomia.co.uk/fdbodies
https://www.familialdysautonomia.co.uk/screening
https://www.familialdysautonomia.co.uk/contact
https://www.familialdysautonomia.co.uk/about1
https://www.familialdysautonomia.co.uk/suppliments
https://www.familialdysautonomia.co.uk/events

Whois Information

Whois is a protocol that is access to registering information. You can reach when the website was registered, when it will be expire, what is contact details of the site with the following informations. In a nutshell, it includes these informations;

Domain Name: DSGB.ORG
Registry Domain ID: D104472104-LROR
Registrar WHOIS Server:
Registrar URL: http://www.domainmonster.com
Updated Date: 2017-05-21T23:49:31Z
Creation Date: 2004-05-28T16:44:09Z
Registry Expiry Date: 2018-05-28T16:44:09Z
Registrar Registration Expiration Date:
Registrar: Mesh Digital Limited
Registrar IANA ID: 1390
Registrar Abuse Contact Email:
Registrar Abuse Contact Phone:
Reseller:
Domain Status: clientDeleteProhibited https://icann.org/epp#clientDeleteProhibited
Domain Status: clientTransferProhibited https://icann.org/epp#clientTransferProhibited
Domain Status: clientUpdateProhibited https://icann.org/epp#clientUpdateProhibited
Registry Registrant ID: C145877574-LROR
Registrant Name: Bryan King
Registrant Organization:
Registrant Street: 32 Glen Way
Registrant City: Watford
Registrant State/Province: Herts
Registrant Postal Code: WD173JL
Registrant Country: GB
Registrant Phone: +44.1923443676
Registrant Phone Ext:
Registrant Fax:
Registrant Fax Ext:
Registrant Email: [email protected]
Registry Admin ID: C145877573-LROR
Admin Name: Bryan King
Admin Organization:
Admin Street: 32 Glen Way
Admin City: Watford
Admin State/Province: Herts
Admin Postal Code: WD173JL
Admin Country: GB
Admin Phone: +44.1923443676
Admin Phone Ext:
Admin Fax:
Admin Fax Ext:
Admin Email: [email protected]
Registry Tech ID: C145877575-LROR
Tech Name: Webfusion Limited Europe
Tech Organization:
Tech Street: 5 Roundwood Avenue
Tech City: Stockley Park
Tech State/Province: Uxbridge
Tech Postal Code: UB11 1FF
Tech Country: GB
Tech Phone: +44.8454502310
Tech Phone Ext:
Tech Fax:
Tech Fax Ext:
Tech Email: [email protected]
Name Server: NS1.PCDNS.CO.UK
Name Server: NS2.PCDNS.CO.UK
DNSSEC: unsigned
URL of the ICANN Whois Inaccuracy Complaint Form: https://www.icann.org/wicf/
>>> Last update of WHOIS database: 2017-09-23T05:13:30Z <<<

For more information on Whois status codes, please visit https://icann.org/epp

Access to Public Interest Registry WHOIS information is provided to assist persons in determining the contents of a domain name registration record in the Public Interest Registry registry database. The data in this record is provided by Public Interest Registry for informational purposes only, and Public Interest Registry does not guarantee its accuracy. This service is intended only for query-based access. You agree that you will use this data only for lawful purposes and that, under no circumstances will you use this data to: (a) allow, enable, or otherwise support the transmission by e-mail, telephone, or facsimile of mass unsolicited, commercial advertising or solicitations to entities other than the data recipient's own existing customers; or (b) enable high volume, automated, electronic processes that send queries or data to the systems of Registry Operator, a Registrar, or Afilias except as reasonably necessary to register domain names or modify existing registrations. All rights reserved. Public Interest Registry reserves the right to modify these terms at any time. By submitting this query, you agree to abide by this policy.

  REFERRER http://www.pir.org/

  REGISTRAR Public Interest Registry

SERVERS

  SERVER org.whois-servers.net

  ARGS dsgb.org

  PORT 43

  TYPE domain

DOMAIN

  NAME dsgb.org

  HANDLE D104472104-LROR

  CREATED 2004-05-28

STATUS
clientDeleteProhibited https://icann.org/epp#clientDeleteProhibited
clientTransferProhibited https://icann.org/epp#clientTransferProhibited
clientUpdateProhibited https://icann.org/epp#clientUpdateProhibited

NSERVER

  NS1.PCDNS.CO.UK 212.48.79.170

  NS2.PCDNS.CO.UK 212.48.79.170

OWNER

  HANDLE C145877574-LROR

  NAME Bryan King

ADDRESS

STREET
32 Glen Way

  CITY Watford

  STATE Herts

  PCODE WD173JL

  COUNTRY GB

  PHONE +44.1923443676

  EMAIL [email protected]

ADMIN

  HANDLE C145877573-LROR

  NAME Bryan King

ADDRESS

STREET
32 Glen Way

  CITY Watford

  STATE Herts

  PCODE WD173JL

  COUNTRY GB

  PHONE +44.1923443676

  EMAIL [email protected]

TECH

  HANDLE C145877575-LROR

  NAME Webfusion Limited Europe

ADDRESS

STREET
5 Roundwood Avenue

  CITY Stockley Park

  STATE Uxbridge

  PCODE UB11 1FF

  COUNTRY GB

  PHONE +44.8454502310

  EMAIL [email protected]

  REGISTERED yes

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