I have had many parents contact me wanting to meet other PKU families and not knowing where to start.
Growing up I went to a clinic at the University of Washington that had monthly meetings with all the parents and PKU patients from a certain age range. We had our blood tests and assessments individually. Then the parents met in a support group fashion with a social worker, and the kids went with the nutritionist for educational activities on following the diet and living with PKU. I now realize this was quite a luxury, as many clinics do not offer this type of support.
If you don’t have facebook and/or don’t know anyone in your area with PKU, it can be hard to get answers to those everyday questions like what do you pack for your child’s lunch? Where do you buy low-protein foods? How do you get formula covered by insurance?
Well I just discovered this wonderful website called Kinsights, that has a group for PKU families! So far it is available in the U.S. and Canada and offers support to all parents, as well as special interest groups like the Phenylketonuria Support for Parents and Families group.
Here is why I am so excited:
- Kinsights is a safe and secure forum to ask and answer questions
- It is FREE
- You can get advice from other families in your same situation
- It is easy to create an account, you can simply use your facebook account if your prefer
Check it out!!
This is not a sponsored post