Familial Dysautonomia

or

Riley-Day Syndrome

as distinct from Dysautonomia

 

This syndrome seems to me, a layman, to be best diagnosed by parents when their child can cry - but sheds no tears.   It is best described by some sites I've found, one called the FD Homepage, and the other published by the FD Hope Foundation of America .   The Dysautonomia Society for Children also has a description of it.   Between them, quite a good idea of the problem can be achieved.   Me, being a simple layman in matters medical, simply refer people interested to these sites.

 

Itc seems that this disease is genetically based, and comes from the gene pool of the Ashkenazi Jews.   This is not a racist comment, but an aid to diagnosis.    If the patient does not have Jewish blood in his/her veins, then I am informed that F.D. becomes far less likely.   FD can present a range of symptoms, including the patient's body having poor temperature control.  When thety are all put together, you have a complicated situation.

 

So, if your kid has these symptoms then you could do worse than peer at these pages.....I'm not saying that your patient/son/daughter does have this...only that it is a line to check out.    If you are in the UK, like me, then how about suggesting it to you GP that you get checked  by the specialist hospital (in the UK, the Great Ormond Street Hospital for Children), and see if they shoot it down in flames <grin>.   If they do, believe me, you'll be very happy people!

 

Again aiming at UK parents and helpers, the DYSAUTONOMIA SOCIETY OF GREAT BRITAIN can help in ways that I know not......they are described below.

"DYSAUTONOMIA SOCIETY OF GREAT BRITAIN

Dysautonomia Society of Great Britain
PO Box 17679
London
NW4 1WS
Tel 020 8357 0038
Fax 020 8958 8760

The Society is a National Registered Charity No. 285399 founded in 1984. It is mainly a fundraising body.
It offers:

Support by telephone and letter

Activities

Fundraising to provide financial support for research and for affected families

Publications
Care manuals are available on request

Members
The families of nine affected children and adults

Subscription
Donations only

Medical text last updated December 1997 by Dr F Axelrod, New York University Familial Dysautonomia Center
Group details last updated October 2000

 

Contact a Family is a UK charity which helps families who care for children with any disability or special need. We are a main source of information about rare disorders and are able to assist affected adults as well as children. The CaF Directory Online contains details of many medical conditions and also patient support groups. The information in it is also provided as part of the NHS Direct Online service.

 

NHS Direct logo

 

Contact a Family may also be able to help with information and contacts for conditions not listed - please call the CaF Parent Advisers on (020) 7608 8700 or 0808 808 3555.

Details

Address:-
Contact a Family
209-211 City Road
London EC1V 1JN
 

Fax 020 7608 8701
Minicom 020 7608 8702
E-mail info@cafamily.org.uk
Web www.cafamily.org.uk
Reg Charity No 284912
Company limited by guarantee No 1633333



Although great care has been taken in the compilation and preparation of this work to ensure accuracy, Contact a Family cannot accept responsibility for any errors or omissions. Any medical information is provided for education/information purposes - you should obtain further information from your medical practitioner.

Contact a Family, 170 Tottenham Court Road, London W1T 7HA"

 

For people looking for support with this condition in the USA, the Dysautonomia Foundation  can offer what I can't - accurate information and a knowledgable but sympathetic ear, and who also run the Dysautonomia Treatment and Evaluation Center in New York and in http://www.health.gov/nhic/NHICScripts/Entry.cfm?HRCode=HR2198