PKU Carers Compendium Launch
Over the past 18 months MDDA in collaboration with Anne-Marie Desai – Metabolic Dietitian from the Royal Melbourne Hospital have developed the PKU Carer’s Compendium resource and program for missed or late diagnosed PKU adults being cared for at home, living in shared community housing facilities and nursing homes. Thank you to Cortex Health, Nutricia, Orpharma and Vitaflo for sponsoring this important and essential resource. The PKU Compendium was launched nationally on Tuesday August 11th.
Before COVID-19 we had planned to launch the Compendium at the Royal Melbourne Hospital inviting PKU Victorian Carers and Stakeholders. Whilst having to work from home due to the coronavirus provided its own challenges it also gave us the great opportunity to launch the Compendium virtually. This opened the door of possibility, as location no longer posed a limitation. With the participation of National PKU Adults clinics we could invite carers from across Australia. 65 Carer’s along with Dieticians, Metabolic Nurses, and Industry Supporters from Victoria, New South Wales, Queensland, Tasmania, and Western Australia participated in the virtual event.
With the experienced assistance of our long-time supporters gener8 Events, we used a secure event management platform that provided an incredible experience for all attendees and meant that we could include so many more virtual sessions, live networking groups, live Q&A and so much more.
MDDA’s first virtual event was a great success!
“Chaos to Calm”
The event opened with a moving very personal video story “Chaos to Calm”, the journey as described by Leigh’s carers, Deb and Dennis. Leigh now 65yrs was born August 1963 in Tasmania, ten years before newborn screening was introduced. Diagnosed with PKU around 8 years of age Leigh commenced a PKU diet briefly before being placed in care for the past 55 years.
On his Drs recommendation Leigh started his PKU diet in September 2018. The video described the benefits and improvements Dennis and Deb have seen in Leigh in the past 2 years and the positive impact on Leigh’s quality of life after being placed on the PKU diet.
“The improvement is very rewarding and can be emotional at times. To see his life improve so much is so good.” – Dennis
In October 2019 Leigh and Dennis attended MDDA’s family retreat in Tasmania. This was the first time ever Leigh met with other PKU individuals and families. His story moved us all deeply and he made a lasting impression on everyone that attended.
“To receive this compendium and also meet other people that are dealing with PKU and talk to them is such a great help in understanding this condition.” – Dennis
The event consisted of the official launch of the Compendium:
- A live webinar on the compendium, presented by Royal Melbourne Hospital Professor Gerard de Jong and Dietitian Anne-Marie Desai,
- Live webinar on the PKU peer support program, presented by MDDA Patient Pathways Telehealth Nurse Jo Campbell,
- State/Region based clinical discussion breakout groups
Following from the launch, attendees were able to explore the online Low Protein Food showcase and speak to the suppliers on hand to answer any questions. A highlight was the Special interest ‘speed chats’ for attendees to find out more on:
- Guthrie Card/Finger Prick testing
- Label counting for PKU
- Dietary tips & meal planning for PKU
- MDDA – Patient support services
The PKU Carer’s Compendium
The high quality visual personal compendiums will assist in educating patients carer’s on PKU, the PKU diet, formula & supplements, meal plans, blood spot testing guide and contains other useful resources and information. Often people caring for these late diagnosed adults are generally not family members and have little or no knowledge of PKU and the management of PKU.
Hope for the late diagnosed
Since the mid 1960’s all babies born in Australia have been screened for PKU shortly after birth and commenced on a specialised low protein diet and formula. Lifelong dietary treatment is required for people with PKU, as the build-up of phenylalanine can lead to brain damage, with learning and behavioural difficulties. For people born prior to newborn screening, it has been found that introducing a low protein diet with PKU formula (even later in life) can reduce symptoms resulting from late diagnosed or untreated PKU. Improvements in symptoms can include;
- Decreased aggressive and disruptive behaviour
- Decreased irritability and hyperactivity
- Decreased neurological symptoms
- Decreased episodes of incontinence
- Disappearance of eczema
- Increased ease of bathing and dressing
- Increased verbal communication and appropriate eye contact
- Improved intellectual functioning
- Improved mood Increased social awareness
MDDA are expanding our Pathways Program and will shortly release the next in the series:
Diet for Life and PKU Maternal compendium
If you would like further information on the PKU Carers Compendium and program please contact firstname.lastname@example.org