Pope Francis’ special audience with the HD community in solidarity with South America – May 18, 2017

On May 18, for the first time ever, Pope Francis will recognize the devastating plight of those living with and affected by HD. He will host the world’s largest gathering of the HD community. The global gathering was inspired by the plight of families from South America most ravaged by HD. Families from Colombia, Venezuela and Argentina (meet the families) …

Dee’s story

I first met with this family on the 30th March 2012 after they were referred to me by the Genetics Counsellor.  She had been present at the consultation on the 3rd March 2012 when the diagnosis was confirmed that their 14 year old daughter, Ellie-Mae has Juvenile Huntington’s disease; which is a progressive neurological disorder which is life limiting.  The …

António’s story

Durante muito tempo o meu sogro tinha comportamentos um pouco estranhos, assim como uma maneira diferente de se movimentar, muitas pessoas perguntavam se era nervoso ou se seria alcoólico, ou também se seria pelo motivo de a mulher o ter abandonado. No ano de 1977, e por intermédio de uma amiga e colega da minha mulher, foi-nos indicado um médico …

Pawel’s story

Życie w rodzinie z chorobą Huntingtona, Paweł  lat 26, Ulanów, Podkarpacie Choroba Huntingtona, inaczej pląsawica lub choroba Świętego Wita jest znana w mojej rodzinie od 1938 roku. Wiem o tym z opowieści starszych ludzi. Stwierdzono problem pląsającego chodzenia  u mojego pradziadka. Został on rozstrzelany podczas II wojny przez Niemców  za to, że w czasie wysiedlania ludności  opóźniał wymarsz.  Mój dziadek …

Magda’s story

Mam na imię Marzena, mieszkam w Olsztynie, moja córka Magda (16 lat) jest chora na pląsawicę Huntingtona. Magda rozwijała się dobrze, chodziła do szkoły i w wieku 8 lat zaczęła mieć problemy z równowagą, często potykała się, upadała. Zaczęłam chodzić do różnych lekarzy, opowiadałam o jej problemach. Widziałam też zmiany w zachowaniu córki, nie wiedziałam dlaczego tak jest, gdzie szukać …

Ivone’s story

Irene Ferreira Moutinho, a minha avó materna, herdou a DH do pai. E este terá herdado a doença de sua mãe. Faleceu em 2010 com 90 anos e viveu 23 anos com a DH. O meu bisavô emigrou para França quando a minha avó tinha 4 anos. Nunca mais voltou a Portugal e nunca mais viu as filhas portuguesas que …

José’s story

A Teresa nasceu em 1950, os primeiros indicadores de DH surgiram em 2002, mas só em 2009 efectuou o teste genético. A mãe da Teresa faleceu em 1998, embora nunca tenha sido diagnosticada, tornou-se evidente que tinha DH. Aos 17 anos, começou a trabalhar na área da contabilidade, nesse mesmo ano começámos a namorar, embora nos conhecêssemos desde crianças, pois …

Verna’s story

Verna Dowe has spent a lot of her life planning funerals. And much of the rest caring for her dying children. One. After one. After one. Today, their images cover her nursing home nightstand or rest in the shadows of old albums. Blond-haired babies in black and white. Freewheeling teenagers in hip-hugging jeans. Unrecognizable young adults in nursing home beds …