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Feelings
About FOP
What
should I tell my friends and family when they ask me about FOP?
You
should be truthful and educate them about FOP. FOP is a painful
condition where the body forms extra bones that lock-up the joints,
thus restricting mobility. The condition may be aggravated by minor
injuries that would not be a problem for someone who did not have
FOP. Your friends and family probably have never heard about FOP
and they may wish to learn more about it. You will play an important
role in their education about this condition and you may want to
share a copy of this book with them.
One
girl (age 5) who has FOP was approached by a little boy who said,
"Those lumps on your back are weird." She responded factually, "They're
not weird. They're bone." A direct matter-of-fact approach will
be educational, disarming, and constructive. Hopefully, in time,
your family and friends will see beyond your child's FOP and recognize
that FOP is just one part of who your child is.
What does my child's teacher need to know about
FOP?
Your
child's teacher should know about the condition. Your child's teacher
also should be aware of the risks involved with falls and trauma
so that they can be prevented. Be sure that the teacher also realizes
that your child may be unable to raise his/her arm in order to gain
attention and may use a pencil or flag instead. In other words,
make sure that the teacher is aware of your child's physical limitations
and special needs. Such an awareness will help alleviate much frustration.
Apart from practical concerns, the teacher may have questions about
FOP, since it is unlikely that s/he will have seen another individual
with the condition. It may be helpful to arrange a private meeting
with the teacher to answer general questions about FOP.
How
will my child cope with having FOP? How will the family respond?
It
may be surprising, but children who have FOP generally cope better
and more effectively than the parents. Although the physical manifestations
of FOP can be devastating for both children and their parents, the
children generally find ways to adapt and cope with the increasing
immobility. While it is difficult for parents to witness the progressive
loss of mobility, a positive and constructive approach appears to
be the most beneficial for all. Most well-adjusted adults who have
FOP speak of the on-going physical challenges presented by the disorder.
Many affected adults also recall fondly the days of childhood when
they could still move easily. They appreciate that their parents
allowed them to live as normal a childhood as possible without the
imposition of severe activity restrictions. Many adults who have
FOP speak of such a constructive family "attitude" as a way to help
decrease feelings of hostility and frustration that naturally may
accompany the physical limitations caused by the progression of
this (or any other) disease.
It
has been noted anecdotally that children who are more severely affected
early in childhood have an easier time coping psychologically with
the physical limitations than individuals who have a relatively
unrestricted childhood and develop the symptoms of FOP later in
adolescence.
There
are added stresses to families when one member has a disability.
It is very important to allow siblings to talk about their feelings
regarding the disabled family member and to allow them to express
their negative feelings. Talking with a trained counselor can be
helpful. It is hard for parents to be objective about a situation
close to them, particularly when needs of different family members
seem to be in conflict. Professional guidance, family counseling,
and consultation with other members of the FOP community are all
additional resources that may be useful.
Can
people with FOP live independently?
Due
to the progressive nature of FOP, it is unlikely that people who
have FOP will be able to take care of themselves with the degree
of independence that is required to live alone. Most people who
have FOP live with their families and rely on others (to varying
degrees) for their care. Others employ personal care attendants
who look after their needs at a separate residence, giving themselves
and their families additional space and independence. Some people
who have FOP live in residential care facilities.
When
will there be answers?
Just
as FOP results in physical limitations for people who have FOP,
the nature of this condition results in limitations for the researchers
who are trying to understand its cause and develop effective treatments.
The inability to procure tissue specimens (since it is important
to avoid unnecessary surgical trauma), the current lack of animal
models (which would be valuable for studying disease progression
and for testing drug treatments and other therapies), and the lack
of large families (which are used in genetic analyses to trace the
inheritance of a disease through several generations) have long
frustrated research on FOP. Doctors are working constantly to find
detours around these formidable obstacles in order to find better
answers for people who have FOP. The focus of research efforts is
to identify the cause and to establish effective treatment and prevention.
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