Maja and Karin Grape -
Sweden
 |
Maja and Karin Grape were born the 28th of April 1995
in Östersund
Sweden.
When the girls were about five mounts when we did found
out that something were wrong. Karin had some
bruises on her skin and we went to the local Health
Care center. We were referred to Karolinska hospital
in Stockholm, one of three kogulationscenter in
Sweden. We don´t have any bleeding deseaes before
in our families. |
After several days of testing a professor came up
from the basement to watch the twins with the strange platelets he
observed under the microscope.
-Glanzmans thrombastenia, he
declared in triumph.
- Platelets are his hobby, a nurse
whispered.
The twins were now 5 months old. From that day we
were at the "parents training program" with doctors,
physiotherapists and social workers, though we didn´t know.
Helmets, knee- and elbow pads and a safe environment it was a new
world and probably do you know what we talking about.
The entire family moved from a old, narrow house
with steep stairs to a newer one-store
building better suited
for Karin and Maja.
Over the years we have had the best medical
support at the hemophilic enter in
Karolinska hospital in
Stockholm and at our local hospital in Östersund. Twins with a
rare illness draw attention, doctors remember us.
Up to 3rd grade the twins wear helmets in school
and had an assistant watching them
during outdoor-activities.
In 5th grade they asked to be released from the assistant. We`ve
tried to interest the girls to the sport of swimming but they said
they rather play soccer, my Good...
Every morning the girls take 2 transexamaccid
pills and a birthcontrol pill before school
to prevent
bleeding. Fever and nose bleeding have been the most common
problem, a puff of the nosespray Octostim and pills every 4th hour
may help sometimes. Injections with NovoSeven seems to help as
well but after a longer period of fever nose bleeding and
infections we have to "fill them up" with blood and fresh
platelets’.
At age two Maja and Karin were diagnosed
rheumatoid arthritis but since 2005 they`ve got two injections of
Enbrel every week and the symptoms disappeared almost
to100%!.
During this twelve years of their lives Maja and
Karin never been to a serious accident with sudden impact on head
or belly, though we have called for ambulance a couple of times
after blood-filled throw-ups.
Things are easier nowadays, the girls are very
good at cooperate and take a lot of responserbillity in their own
treatment. Parents can, from time to time relax.
Best regards
Eva-Lena and Per Grape
Are,
Sweden
Email
Eva-Lena
