Prof. Rani Singh:
What will change in nutritional management in PKU?
Nutritional therapy and adjective therapies (kuvan, Peg-PAL etc)
"Let they food be thy medicine, thy medicine be thy food" -Hippocrates
It is important to remember that no matter how many drugs come in the future, diet will still be the most important thing.
Some roles of groups and sciences in development of nutritional management of PKUs:
- Medical science/laboratory science
- Food science/laboratory science
- Nutritional science/dietetics
The lessons that have been learned over the years:
Initiating screening early
Life long diet is necessary
Deficients
There is a lack of adequate supplement with vitamins and minerals in medical foods for infants, this is an issue that still needs to be dealt with.
The PKU diet is proven an effective treatment, but what health risks persist?
- weight gain/obesity
- bone mass reduction
- nutritional problems
- neurocognitive deficits
- growth retardation
- Neuropathy
The prediction for the future is that we are going to see a more personalised diet for each individual PKU.
As a PKU and a consumer of the products our challenge is:
- do we know our diet?
- do we know what our food and amino acid drinks contain? Are we lacking in vitamins?
- we should be challenging our dietician to look at our diets and telling us what is missing
It's important that diet is personalised so we do the get nutrients that may be missing from our diet if we do not eat the correct things.
We need to focus on the gut as well as the brain.
In the future when choosing a medical food and personalised therapy it becomes very exciting and critical to PKU's wellbeing
The dream is one day is that we will have global guidelines!
Social media empowers us to question our diet and lives compare to others around the world.
The main point is even though lots of drugs come out, don't forget how important the diet is.
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