The month of May is dedicated to raising awareness for Huntington’s disease ̶ the genetic neuro degenerative disorder that causes uncontrolled movements, psychological /emotional problems, and loss of thinking ability (cognition).
This special month is devoted to bringing much-needed attention to the impacts of Huntington’s Disease, focusing on knowledge, education, empowerment and action and to draw the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.
What is Huntington’s disease?
Huntington’s disease is an inherited disease that causes the progressive breakdown of nerve cells in the brain. It effects both males and females and people from all ethnic backgrounds.
The disease is directly inherited through an abnormality on chromosome 4. Therefore, if you have a parent with Huntington’s disease you have a 50% chance that you may also develop the symptoms of the disease. Genetic screening is available for those who may be at risk.
Huntington’s disease symptoms most commonly appear in adults aged in their thirties or forties. Early signs and symptoms can include irritability, depression, small involuntary movements, poor coordination, and trouble learning new information or making decisions.
How the disease and its symptoms progress vary between each individual and is unpredictable at best ̶as is the life expectancy of those diagnosed with the disease. The disease has a global and severe impact on all aspects of the life of the person who living with it and in turn their families and support networks.
There is currently no cure for Huntington’s disease, with the goal of treatments being to manage the symptoms of the disease and help people function for as long and as comfortably as possible.
Supporting people with Huntington’s disease at Yooralla
Yooralla has been supporting people with Huntington’s disease and other neurological disabilities at our Neurological Support Services (NSS) in Eastern Melbourne since December 2021. The service was originally established in 1981.
The NSS houses have a state-wide reputation for our expertise in the management and care for people with progressive neurological disorders
The disability support workers and nurses who work at the sites are trained to deliver high intensity care. They have training in managing behaviours of concern, complex bowel management, urinary catheter care, dysphagia, mealtime management, Enteral feeding and tracheostomy care.
Read more about Yooralla’s NSS houses.
How can I get involved?
There are many ways you can get involved in Huntington’s Awareness month.
There are a number of events taking place across the month, including:
- Light it Up 4 HD: Melbourne and other cities across the world will light up iconic buildings around the world to help shine a light on Huntington’s disease.
- Move 4 HD: a unique gathering that aims to encourage our community to participate in physical, cognitive and social activity, all of which have been shown by research to slow and delay the progression of HD symptoms. In an afternoon of dance fitness, this awareness-raising event will celebrate a person’s ability to move and shift our focus from inability to ability.
- Go Blue on May 22: is an awareness-raising initiative that is a fun way to get involved and show your support for people living with Huntington’s disease, by wearing blue clothing, decorating homes and offices blue and any other way that shows your support of people living with Huntington’s disease.
- In Memory: a special memorial service where members of the Huntington’s community can acknowledge, share and express their grief associated with losing someone to HD.
Residents and staff at our NSS service will wear blue on May 22 to bring attention to Huntington’s Disease. You can also find out more about how to get involved on the Huntington’s Victoria website.
To learn more about how Yooralla is supporting people living with Huntington’s disease, contact Maree Maher, Clinical Operations Manager on email@example.com.
Mwezi wa Mei ni kujitolea kwa kuongeza ufahamu kwa ajili ya ugonjwa wa Huntington <unk> ugonjwa wa urithi neuro-degenerative kwamba husababisha harakati uncontrolled, matatizo ya kisaikolojia-hisia, na hasara ya uwezo wa kufikiri (utambuzi). Mwezi huu maalum umewekwa wakfu kuleta tahadhari inayohitajika sana kwa athari za ugonjwa wa Huntington, kuzingatia maarifa, elimu, kuwezesha na hatua na kuvutia tahadhari ya watunga sera, mamlaka za umma, wawakilishi wa tasnia, wanasayansi na wataalamu wa afya. Ugonjwa wa Huntington ni nini? Ugonjwa wa Huntington ni ugonjwa unaorithiwa ambao husababisha uharibifu wa hatua kwa hatua wa chembe za neva katika ubongo. Inaathiri wanaume na wanawake na watu wa makabila yote. Ugonjwa huo unarithiwa moja kwa moja kupitia kasoro ya kromosomu ya nne. Kwa hivyo, ikiwa una mzazi mwenye ugonjwa wa Huntington, una uwezekano wa 50% kwamba unaweza pia kuendeleza dalili za ugonjwa huo. Uchunguzi wa maumbile unapatikana kwa wale ambao huenda wakawa katika hatari. Dalili za ugonjwa wa Huntington kwa kawaida huonekana kwa watu wazima wenye umri wa miaka thelathini au arobaini. Dalili za mapema za ugonjwa huo ni kama vile kukasirika, kushuka moyo, kufanya mambo madogo madogo bila kukusudia, kutoweza kuratibu mambo vizuri, na kuwa na matatizo ya kujifunza habari mpya au kufanya maamuzi. Jinsi ugonjwa na dalili zake zinavyoendelea hutofautiana kati ya kila mtu na haiwezi kutabiriwa kwa kiwango kikubwa - kama vile muda wa kuishi wa wale waliogunduliwa na ugonjwa huo. Ugonjwa huu una athari kubwa kwa kila sehemu ya maisha ya mtu anayeishi na ugonjwa huo na kwa upande wake familia zao na mitandao ya msaada. Kwa sasa hakuna tiba ya ugonjwa wa Huntington, na lengo la matibabu ni kusimamia dalili za ugonjwa na kusaidia watu kufanya kazi kwa muda mrefu na kwa urahisi iwezekanavyo. "Kupitia huduma ya ""Huntington's Disease Support"" (HDS) ya Yooralla, tumeanza kusaidia watu wenye ugonjwa wa Huntington na walemavu wengine wa neva katika huduma zetu za msaada wa neva (NSS) katika Melbourne Mashariki tangu Desemba 2021."" Huduma hiyo ilianzishwa mwaka 1981. NSS ni moja ya huduma za afya za kitaifa zinazohudumiwa na watu wenye matatizo ya neva na walemavu, na ni pamoja na huduma za afya za afya za watu wenye ulemavu. Wana mafunzo katika usimamizi wa tabia ya wasiwasi, usimamizi tata wa matumbo, huduma ya catheter ya mkojo, dysphagia, usimamizi wa wakati wa chakula, kulisha Enteral na huduma ya tracheostomy. Soma zaidi kuhusu nyumba za NSS za Yooralla. Ninawezaje kuhusika? Kuna njia nyingi unaweza kushiriki katika mwezi wa Huntington's Awareness. Mwezi huu, watu wengi watakuwa na fursa ya kufurahia maonyesho ya 'Light Up 4 HD' huko Melbourne, ambayo ni maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho ya maonyesho. Move4HD ni mkutano wa kipekee ambao unakusudia kuhamasisha jamii yetu kushiriki katika shughuli za kimwili, za utambuzi na za kijamii, ambazo zote zimeonyeshwa na utafiti kupunguza na kuchelewesha maendeleo ya dalili za HD. Katika alasiri ya mazoezi ya densi, tukio hili la kuongeza ufahamu litasherehekea uwezo wa mtu wa kusonga na kubadilisha mwelekeo wetu kutoka kutokuwa na uwezo hadi uwezo. Go Blue ni mpango wa kuvutia wa watu wenye ugonjwa wa Huntington kwa kuvaa mavazi ya bluu, kupamba nyumba na ofisi kwa rangi ya bluu na njia nyingine yoyote inayoonyesha msaada wako kwa watu wanaoishi na ugonjwa wa Huntington. - Katika Kumbukumbu: huduma maalum ya ukumbusho ambapo wanachama wa jamii ya Huntington wanaweza kutambua, kushiriki na kuelezea huzuni yao kuhusiana na kupoteza mtu kwa HD. Wananchi na wafanyakazi wa kituo cha huduma ya afya ya NHS watavaa mavazi ya bluu tarehe 22 Mei ili kuvutia watu kuhusu ugonjwa wa Huntington. Unaweza pia kupata zaidi kuhusu jinsi ya kushiriki katika tovuti ya Huntington's Victoria. Ili kujifunza zaidi kuhusu jinsi Yooralla inasaidia watu wanaoishi na ugonjwa wa Huntington, wasiliana na Maree Maher, Meneja wa Uendeshaji wa Kliniki kwenye email@example.com.