Fetal Care Research Foundation
inaugurated a support group for children affected with an inborn
error of metabolism called Mucopolysaccharidoses on 8th August 2003.
The support group also caters to children suffering from other Lysosomal
Storage Disorders (LSDs) such as Gaucher, Pompe and Fabry diseases
for which Enzyme Replacement Therapy is now available.
Benefits of becoming a member of the Support Group
- Support group facilitates
1. Better understanding of the disorders
by the family members.
2. Confirmation of diagnosis free of cost.
3. Cost free or subsidized
comprehensive health care by a team of specialists like geneticist,
pediatrician, orthopedic surgeon, ophthalmologist, ENT specialist,
cardiologist, pulmonologist, physiotherapist, speech therapist,
dentist, psychologist and social worker to get over the physical
and mental sufferings experienced by these children and the family
members from time to time.
4. Creating awareness about
these disorders in their environment such as school, neighbourhood
and relatives so that they are accepted with more compassionate
feelings.
5. Creating special employment giving due considerations
to the physical disabilities of the affected.
6. Easy approach for financial
assistance from both the Government and Corporate bodies to build
a corpus fund / or provide medical insurance to cover the frequent
medical expenses of the affected.
7. Prenatal diagnosis of the subsequent pregnancies
to rule out the disorder and thereby assuring the family of a normal
child.
8. Emotional support to the affected families by
bringing them to gether, and enabling interactions among themselves.
9. Easy access to communication
with other support groups for MPS around the world to keep abreast
with the recent advancements in the treatment and care such as ERT
& advanced surgical care etc., and avail the maximum benefits.
The incidence of MPS disorders is not known in Indian
population. Considering the size of our population, many cases might have
been missed due to the difficulties in identifying the problems and confirmation
of diagnosis. MPS Support Group hopes to pick up the maximum number of
cases possible and be of help to the affected. Supportive care would indeed
make a difference in the life of the affected and help them live their
lives and not let the disease overshadow their existence.
