Digital campaign aims to raise awareness about potential severity of rare condition PKU

For the first time, patient groups, supported by funding from BioMarin, from six countries in Europe have come together with the shared goal of improving health services for people living with the rare condition PKU as part of the Live Unlimited PKU campaign.

The condition limits a person’s ability to break down protein, with potentially devastating effects on the brain if left unmanaged.  In Europe, the condition is screened for during the newborn heel-prick test, but just 9 per cent of the public have heard of the condition.

PKU can have a serious and long-lasting effect on patients’ mental health and quality of life, with a recent study showing that as many as 52% of adults with PKU lived with anxiety or depression.  Other issues reported by patients include ‘brain fog’, sleep issues and lapses in concentration.

In fact, new research reveals people with hidden health conditions like PKU are 42% more likely to find everyday activity, like going on a date, traveling abroad and making new friends, stressful.

The digital campaign aims to raise awareness of the potential severity of the disease and calls for improved standards of adult care. Despite the neurological effects of the condition and difficulties following a low-protein diet, just 12% of adults with PKU have access to the multidisciplinary tools and support they need, with many adults having to go to children’s wards to receive any specialist care.

Key findings include:

• Only 1 in 10 people surveyed were aware of PKU
• People with underlying health conditions are 42% more likely to find a life milestone stressful than people without one, on average.
• People with underlying health conditions are more likely to find certain life milestones stressful than people without a hidden health condition
  • 87% more likely to be stressed about making new friends
  • 40% more likely to be stressed about going on a date
  • 40% more likely to be stressed about retaining a job
• 49% of people with an underlying health condition hide this from their colleagues, their friends (27%), family (18%) and partners (15%).
  • 29% do this because they fear that others won’t understand, and 20% because they think they will be dismissive.

The campaign includes a suite of visual imagery and videos featuring the personal stories of patients across Europe. Campaign videos highlight the experiences and challenges of PKU patients in their respective countries and are available at www.liveunlimitedPKU.com.

The one-year campaign will run until International PKU Day 2020, with many patient groups and individuals helping to raise awareness of PKU until this date. Further events and initiatives will continue throughout the year.