with your FMF diagnosis
Remember that FMF is a hereditary disease, and that genetics
are beyond your control. Being well informed and taking good care
of your physical and emotional health however can go a long way
to helping you feel more in control of your life.
more about FMF
Seek out knowledgeable professionals
and literary resources to gain a better understanding of FMF.
Discuss some of your concerns with someone who will be able
to provide you with reliable information. Resource people can
include: a general practitioner, a genetic counselor, or a pharmacist.
Some questions you might have may
include: How common is this disease? Are there any long-term
complications of FMF? Could other members of my family be affected
by this disease? Will my future generations be affected by FMF?
How safe and effective is colchicine? How soon will the treatment
start working? Do I need to make any lifestyle changes: diet,
If you have a confirmed
FMF diagnosis, other members of your family are at risk of being
a carrier of the gene mutation, or of having the disease. We
recommend you discuss this with your doctor and with your family.
In order for you to have FMF, both
of your parents must be carriers of the disease. Consequently,
each of your siblings has a 25% chance of being unaffected by
FMF (not a carrier); a 50% chance of being a carrier of FMF;
and a 25% chance of having FMF. In certain populations where
carrier rates for FMF are high, it is even possible for one
or both of your parents to actually have the disease. If this
is the case, the likelihood that your siblings will be affected
by FMF increases accordingly.
Being a carrier of FMF is not known
to cause health problems. Note that the onset of the disease
and the symptoms of the disease can vary from one FMF affected
person to another, and even among members of the same family.
It is even possible that an individual who has FMF does not
show symptoms of the disease until later adulthood. In susceptible
populations, amyloidosis can sometimes appear as the first manifestation
of the disease, even in individuals with FMF who do not have
any other symptoms.
If you have a confirmed diagnosis of FMF and your spouse
is not a carrier of the disease, each of your children
will automatically be carriers of the disease. If your children
were to subsequently have children with other carriers, then
there is a risk that your grandchildren could be affected with
If you have FMF and your spouse is a carrier of FMF,
each of your children has a 50% chance of being a carrier for
the disease, and 50% chance of having the disease.
Of course, if you and your spouse both have FMF, each
of your children will be affected by FMF.
See the section entitled
What is FMF? and other sections
of this web site for more information.
- Express yourself
Take the time to share
your thoughts and feelings
There could be a whole range of
thoughts and feelings that you may experience following your
diagnosis. It may be helpful to share these with supportive
family members and friends, or with an online FMF support group.
Some thoughts you have may include:
How will this diagnosis change my day to day life? How will
I explain this disease to people? How will this diagnosis impact
my relationships with important people in my life? …
Some feelings you may have can range
from feeling: fearful, numb, overwhelmed, anxious, angry, sad,
guilty, bitter, isolated to feeling relieved, hopeful, happy,
understood, supported, secure, empowered, etc…
Try keeping a journal,
or express yourself artistically as a means of expressing the
thoughts and feelings you are experiencing, and making sense
of them. Seek out personal counseling if you feel that it is
care of your health
Manage your energy wisely
- Avoid fatigue by not overexerting yourself. Learn what your
limits are and respect them. Prioritize your responsibilities
and set up realistic goals for yourself.
Get enough sleep
– Sleep restores the body and the mind, and contributes
to your ability to deal effectively with your life stressors.
Exercise regularly –
Engaging in regular physical activity will not only keep your
body fit but will also produce a release of endorphins that
will improve your mood, and help you manage your stress better.
Discuss with your doctor what types of exercise are best suited
Eat well balanced meals
– Eating healthy foods will help you feel more
energized and keep you in better spirits. Anecdotal evidence
indicates that for some individuals affected by FMF, certain
foods can trigger an attack (e.g. foods high in caffeine, nuts…).
Monitor the foods you eat preceding an attack, and see if limiting
them helps reduce your attacks.
Try relaxation breathing
exercises or meditation or yoga.
Set aside time for your
social activities, and hobbies.
Take your medication regularly
- There is no known cure for FMF, but it is treatable. Colchicine
is the medication considered most effective in reducing the
intensity and frequency of attacks. Ninety percent of individuals
taking colchicine will benefit from an improvement or even complete
relief of their FMF symptoms.
Although colchicine can cause some
side effects Click
here for info on colchicine’s side effects, sticking
to your medication regiment is important not only to manage
your FMF symptoms, but also to prevent amyloidosis (if you are
among the individuals who carry a particular FMF mutation that confers a risk of developing this complication).
Some individuals can become lactose
intolerant while taking colchicine and may have to make some
substitutions in their diet. Speak to your doctor if you have
any concerns about this. In some individuals, colchicine may
also affect the absorption other medications. Ask your doctor
to make sure that other medications you are taking are not known
to interact with colchicine. For more information, refer to
the links section of our site.
For some people affected
by FMF, attacks can be triggered by: emotional stress, over-exertion,
eating certain foods, or cold temperatures. Being aware of your
triggers may help you limit your FMF attacks.
For more information on stress management
and relaxation techniques see:
- on Stress Management
When somebody close to you has FMF
Seek out information about
FMF. By being aware of the nature of FMF, and how it
can affect your loved one, you are in a better position to offer
the support and caring that he or she may require to better cope
with the diagnosis. Being more informed will lessen some of the
confusing feelings you each may be having.
Take time to process your
own feelings and seek out support for yourself- This
can be a confusing time for the individual receiving the diagnosis,
but may also be one for you.
Be patient –
Accept that it may take some time for your loved one to adapt
to their new reality following the diagnosis. Understand that
this is a natural process and that some days may be better than
Encourage your loved one to
make healthy lifestyle choices that will help contribute
to their overall health and well-being.
Show acceptance and understanding
- As you learn more about FMF, you will understand that
despite some lifestyle changes and proper adherence to a medication
regiment; some FMF symptoms can still occur in some individuals.
Don’t blame yourself
– genetics are beyond your control. Everyone is a carrier
for at least 2-3 genetic conditions and you will also have passed
lots of “good” genes onto your children.
Help your child understand
his/her diagnosis, its implications and how to care for their
Inform your child’s
school administration and teachers that he/she has FMF
and create a plan for how they can manage your child’s FMF
symptoms at school, and how your child can remain up to date with
lessons covered during their absences.
Address questions and concerns
that your unaffected children may have about the disease.
Seek out the support of other
parents who are going through a similar experience to
break the isolation you may feel. Link up with online groups that
offer support and information sharing for individuals affected
by FMF and their families. Seek out other families affected by
FMF in your local community.