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


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