"The disease must be accepted and families must
adjust to its development". These are the first and most difficult
steps which affected families must deal with, and doctors need to be
consulted, if the diagnosis of Progeria is to be accurate. This takes
time.
As parents and accompanying doctors we must resign ourselves first of
all to the fact that this child will develop in a completely different
way. This can be a very painful process. We are often forced by this
diagnosis to examine our own views on life.
Many questions and problems will arise in the course of time. All of
the child's questions should be answered openly, honestly and age-appropriate,
so as to avoid misunderstandings. The affected child learns to accept
himself in such a way as it is just.
It must be decided early whether medical help is required. Traditional
medicine has nothing to offer at this time to assist in treatment and/or
preventative therapy. We believe that attempts with aspirin usage or
growth hormones with children with Progeria were not really helpful.
However, miscellaneous alternative therapies can help delay the symptoms
of the disease or to make the effects more bearable.
The following measures, derived from individual experiences of families,
have turned out to be very helpful:
- Early doses of homeopathic or biochemical medicines. This method
delays the effects of the arteriosclerosis and reduces pain and strained
mental conditions
- Early contact with other affected families and qualified therapists,
so the children and their families receive emotional support, important
information and help.
- Gentle physiotherapy and a lot of physical movement. This fights
against premature stiffening of the joints. The muscles are strengthened
and the blood circulation is promoted.
- Good dental care of the first teeth and regular visits with the
dentist. Treatments must be measured carefully here. There is often
only a partial growth of second teeth, and the teeth are crowded.
- Effective medical bath essences and body lotions help to alleviate
the itch and to diminish the dryness of the thin skin.
- Timely acquisition of necessary aids. For example, the child may
want a wig if the child goes to school.
Our families have experienced that all children with Progeria are full
of joy and life if they can build self-confidence and hope with their
families and friends.