Hereditary pseudo hemophilia runs
in my family. We came to know about this when my sister was diagnosed few years
back. I am still to be tested. I also experience heavy menstrual bleeding and
purpuras like my sister. At times I think that it is extremely difficult to
live with a bleeding disorder but if I am also diagnosed the same disease then
it will not come to me as a shock as I have a family member who manages to live
a normal life despite of numerous bleeding episodes.
I am a bit worried and
scared because if I am declared as a patient of hereditary pseudo hemophilia
then my life will surely change to some extent. It may be possible that I might
start worrying for my condition and start living a restricted life that might
be controlled by my disease. But what shall be will be and I will have to accept
the reality. I have seen how difficult it is to maintain the normal pace of
life for a person having a disease which cannot be cured. It is a disease
resulting from a defective gene and no one has control over it. This disease
has no permanent cure as of now but it can be managed effectively.
I think that
family members including parents, siblings, grandparents, aunts and uncles
should understand and support only then a patient with a bleeding disorder is
able to live a satisfying life. Each one must try to strengthen the willpower
and inner potentials of the sufferers so that a new direction can be given to
their life. I have witnessed how my mom infuses factor injection to my sister
when she bleeds badly. I could feel my sister's pain which she experiences
during infusions.
In fact for the first time I heard about hemophilia was when
I was in high school. At that time I knew that hemophilia is a kind of bleeding
disorder which results in prolonged bleeding. But I got a shocker when I came
to know that my sister was suffering from the very same disease. I could recall
an incident which marked the beginning of the search of an extremely important
question: why does my sister bleed for so long? We went to Essel world to enjoy
and have fun. My sister wanted to ride a toy car. My uncle agreed and took her
for a toy car ride. While she was riding the car suddenly another driver
driving the toy car hit her. She got a heavy jerk. The jerk was so hard that
she started bleeding badly. We got so worried that we took her to the hospital.
Instead of treating my sister immediately all the doctors started assuming that
she might be suffering from one or the other disease. They recommended a series
of test for my sister and forgot to treat her bleed. My mom tells me that it
was extremely frustrating to see all that happening with my sister.
Now I know
the exact reason of my sister's prolonged bleeding tendency and think that her
life is really difficult and painful but my mom supports and cares her in a
wonderful way. I must say that my mom is sister's God who takes her pain on her
part and give relief to her trembling heart by saying "Your life is beautiful
so live every moment of it to the fullest".
* * *
Most insightful writing showing a positive
life-affirming approach to coping with a serious illness
Megha is a young woman whose sister has hemophilia. Megha suspects
that she also has it. But she chooses to deal positively with her situation,
asserting that with the empathy and support of family and loved ones, women
with hemophilia will have the strength and ability to lead complete, fulfilling
lives.
Witnessing a tough life
