About Eh­lers-Dan­los Syn­drome

The Irish Times - Tuesday - Health - - Health Ehlers-danlos Syndrome -

The symp­toms and prog­no­sis vary de­pend­ing on the type of EDS di­ag­nosed, the age at di­ag­no­sis and the in­di­vid­ual.

EDS has many sec­ondary con­di­tions such as dys­func­tion of the au­to­nomic ner­vous sys­tem and gas­troin­testi­nal is­sues.

The symp­toms can in some cases be ex­tremely dis­abling, im­pact­ing pa­tients’ school work, ca­reer pro­gres­sion, re­la­tion­ships and men­tal health due to the na­ture of the dis­or­der.

Early di­ag­no­sis leads to early in­ter­ven­tion which can dra­mat­i­cally im­prove a pa­tient’s qual­ity of life.

Ge­netic test­ing is avail­able for each of the sub­types ex­cept Hyper­mo­bile EDS which is di­ag­nosed through clin­i­cal in­ves­ti­ga­tions. Un­for­tu­nately, Hy­per mo­bile EDS is con­sid­ered vast ly un­der di­ag­nosed in Ire­land as there is no clin­i­cal Eh­lers-Dan­los syn­drome spe­cial­ist ap­pointed by the HSE.

Life ex­pectancy can be short­ened for those with the Vas­cu­lar EDS due to the pos­si­bil­ity of or­gan and ves­sel rup­ture. But life ex­pectancy is usu­ally not af­fected in the other types.

There can be a wide or nar­row range of sever­ity within a fam­ily, but each per­son’s case of EDS will be unique.

While there is no cure for the Eh­lers-Dan­los syn­dromes, there is treat­ment for symp­toms and there are pre­ven­ta­tive mea­sures that are help­ful for most.

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