My Story of Triumph
By Fani Tsakanikas
Toronto, Canada

I want to thank Helen Smith for creating this website and for putting me in touch with people like myself for the first time ever in my life.

All these years I was alone in my battles with the GT and many times I wished for meeting someone who knows my pain and can identify with my battles. When I first came upon this website I cried. I was overwhelmed with the connection I had yearned for all those years. Here is my story; it’s a story of determination and sheer gut to challenge the doctors who said I should not even consider having a child. I live my life to the fullest everyday and when I have little hills to climb I just climb them.

I was born in Toronto in the year of 1963 to immigrant Greek parents who came to Canada to start a new life. I was their first-born and 6months after my birth my mother noticed that I was always bruised and had a tendency to have light nosebleeds. After a trip to Sick Children’s Hospital a doctor of hematology by the name of Peter Mcleaur gave my parents the diagnosis of Glanzmanns Thrombasthenia, Type1.

Dr. Macleaur was my doctor till I turned 20. He was my hero and one of the greatest hematologists that had dedicated his life to his patients and the hospital. He gave mother a description of what my life might entail, the heavy hemorrhaging when I was to start my menses, the possibility of severe nosebleeds, or bleeding in the brain and intestinal track. Life looked hopeless at first for my parents and me.

I did however show them other wise. You see I was a feisty independent little tomboy who loved adventure and climbing and just having fun. Did I tell you about the time I climbed to the school roof…..that’s another story!!!

For some incredible reason I was not one of the heavy bleeders they had anticipated. While growing up I experienced some tonsil bleeds that required some platelet transfusions, and in 1968 while on a trip to Greece with my mother I had a bleed from my tonsils that required on blood transfusion. As far as nosebleeds went I had a few that seemed to be controlled by applying pressure, nothing to serious.

In the summer of 1974 I went on a trip to Greece with my mother and this was during the time that my mother observed that I was starting to develop. We went to a very holy place where the icon of the Virgin Mary has been said to perform many miracles. This was and island called Tinos and the legend has it that the icon was found by sailors during the time of the Ottoman Empire occupation. The Greeks of the island witnessed many miracles when the icon came into their ownership. It is said to have saved them from slaughters and from men and women dying in the sea. However in more modern time a church was built and donated to the icon by the people of the island and it was during this time that miracles started to occur so much so that people would undertake a pilgrimage to this destination to heal the sick and the blind. I too took this pilgrimage at the age of 11 and prayed to the icon to help me not to have heavy bleeding and to bless me with one child.
Imagine the burden one child so young had to carry having been told that there was a possibility I could not have children.

Then came the much anticipated time for me to start my period. It was right after the trip to Greece and when my menses came and I was able to have medium to some heavy bleeding but they would start and stop on their own. First sigh of relief, this continued my entire adolescence to my now adult life, however I did start the Birth Control pill when I was 17 and continued till 43.

Fast track to 1984-85 when I discovered I was pregnant with my daughter who was born in September of 1988.

During this very exciting time a doctor from Sick Children’s in Toronto contacted me and asked me to come in to give a blood sample for research. I explained to this Dr. Doyle that I was pregnant and traveling was not always easy for me as I lived and hour and a half from Toronto. He then went on to say that it would be very necessary to meet with me, as there would be things they had to monitor and he said there were risks I needed to be made aware of. I was 6 months pregnant at the time and this was somewhat scary. I made the trip and sure enough the information I received was vital. You see they had to monitor my antibody level because if antibodies were found they would lower the babies platelet count and delivering vaginally was not an option because the baby could have hemorrhaged in the brain. At the same time having a C-section performed was not conducive to my condition because the cutting to caused a great deal of bleeding.

The second obstacle I faced with this pregnancy were all the issues of things that could go wrong with a regular pregnancy but now I was considered a high-risk pregnancy.
So I was put into the hands of a wonderful doctor at Mt. Sinai and he and a group of great doctors worked very hard in coming up with a plan to deliver my baby safely and guarantee my own safety. I delivered a healthy baby girl and after the birth I did experience some minor bleeding episodes however they were controlled and after 24 days in hospital I was sent home…..did I tell you that my baby was one of the most beautiful little girls they had ever seen. Oh and one more thing an epidural was not an option for someone with GT, so I had her completely drug free….it was a 12 hour labor.

Fast track to the year 2000 when I experienced a massive upper GI bleed that landed me in hospital for 14 days and close to death. I did however pull through and subsequently had about 7-8 more upper GI bleeds that were more controlled thanks to that wonder drug Cyclocapron or better known as Tranexamic acid. God bless the individual who made this drug. I since take a dose of it every day and more if I suspect an upper GI bleed and a prevacid everyday.

Just this year I had a hysteroscopy and an endometrial ablation. I noticed heavy bleeding and clotting and my blood was always low so I had the procedure and it has helped me a great deal.

For me I have to keep a constant eye on my hemoglobin levels as well as my ferratin levels so that if there is bleeding I have better chances. I go 3-4 times a year to the hospital for iron infusions done intravenously since taking iron supplements do not help as much.

I have a beautiful daughter Samantha who is now 18 and this year I am going back to that island in Greece called Tinos to make another pilgrimage to thank the Virgin Mary for helping me through and to triumph through my life to far….God is good and I am living proof that miracles do happen everyday.

Email Fani