Rubinstein Taybi Syndrome: Support for Families

For many parents of disabled children, their own child may be the first person they have ever met who has a disability. Any of us may feel frightened when we are first exposed to something unfamiliar simply because we cannot be sure what to expect. It can be even more frightening when the unfamiliar affects your own child–especially if you had always assumed until then that disabled people necessarily lead tragic lives of deprivation and suffering.

Support groups and networks can be invaluable in helping reassure families that a happy and fulfilled life is still possible after a diagnosis. It may be a very different life, with a very different daily routine than they had planned upon when starting their family. But it can be just as rewarding.

But what if the affected child has a rare disability–so rare that your child might be the only person with that disability in your entire city? Even if your city has as many as 100 to 300 thousand people? And what if you are also in a developing nation where resources of any kind for people with disabilities are rare and hard to find? Such is the case for families of people with Rubinstein Taybi syndrome.

Rubinstein Taybi syndrome generally involves some degree of cognitive impairment and an assortment of medical problems that might include feeding problems, respiratory infections, ear and eye infections, cataracts or glaucoma, and heart problems.

One American organization for families of people with Rubinstein Taybi syndrome has established a web site that has links to similar organizations around the world. Not surprisingly, most of these organizations are in high-income countries, particularly in Europe. However the web site indicates that sometimes smaller, more informal support networks may still exist in some countries even if there is no official organization there. It is also possible for family members to join a mailing list (via email) that currently has 180 members from two dozen different countries.

The full list of organizations, and instructions for joining the email discussion group, can be consulted at:

http://www.rubinstein-taybi.org/html/organizations.html

Official organizations appear to exist–or at least have web sites in–only two middle-income countries and no low-income countries.

The Argentina page (in Spanish) can be found at:

http://www.rubinsteintaybi.com.ar/

The Brazil page (in Portuguese) can be found at:

http://www.artsbrasil.org.br/

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