Do you have a child who is sick and has no diagnosis?
Then the parent support group is the right place for you. It is difficult in itself to have a child who is sick but is the child is also undiagnosed is even worse and very lonely! We try to break the loneliness and in the parent support group everyone knows what you are talking about, how you feel and experience when friends do not understand that your boy or girl is without diagnosis.
Because the disease is undiagnosed, doctors do not know what is the reason why your child is sick. They also do not know if it is genetic or if any medicine can cure the child, so the child will be healthy. Many also find it difficult to get the right help from society but also health care. In some places in Sweden, children who lack diagnosis do not have access to habilitation, which we think is completely wrong.
We also share joy, sadness and sometimes you need to be comforted and then everyone is there for you. There are also a lot of tips on accessibility and assistance.
Members of the parent support group have access to a Lawyer (free of charge) for LSS applications.
Wilhelm Foundation informs parents about diagnosis
The idea is also to help and support parents in their search for a diagnosis for their child. But also inform what is meant by the various investigations and where the parents can turn to seek a diagnosis for their child.
We know that many parents have never met anyone else who has a child who has no diagnosis and loneliness can be great. Even if you as a parent meet others with seriously ill children, it is not the same as having an undiagnosed child, where no doctor finds what kind of illness the child has. But in the parent group you get new friends where you don't have to explain and "you get another family".
The Wilhelm Foundation also helps parents whose children have been diagnosed and are members of the group.
Some of the children get a diagnosis and of course the parents are allowed to remain in the group. They are a great inspiration for other parents to see that it is possible to get diagnosed. In the spring of 2020, we have helped some of the families to get in touch with specialists focused on the unusual diagnosis that the child received. We also advise where to go to see if there are any research projects around the world that are looking for patients with the specific diagnosis the child has.
No membership fee
Having an undiagnosed child not only makes holes in the heart but also the wallet, which is why the Wilhelm Foundation has decided not to charge a membership fee because we believe that everyone should be able to participate. But of course, little or large gift is gratefully received, which means that we can do even more for the undiagnosed children and families!
Welcome to our community in the Wilhelm Foundation's support group
