My 15 year’s ITP story in Portugal… and still counting by Lina Moniz
I was first diagnosed with ITP in 2005, when I was 33 years old and 7 weeks pregnant with my first child, a baby girl. After an exceedingly difficult period in which I was put into Intensive Care and began to receive treatment with Prednisolone and intravenous immunoglobulin, with no results whatsoever, my daughter died in the womb at 32 weeks of gestation. At that time, my platelet count was 3. After that, I stopped medication, but the problem persisted, although in a less severe manner, accounting for two digits.
And, what next?
Well, I am Portuguese, living in Portugal and since the beginning, I really had some difficulties dealing with my ITP. Having a scientific education, I really felt the need of further insight on ITP, I was not always able to get to my regular doctor’s appointments. However, I really felt stable over these 15 years and I have been living with a general platelet level way under 50, with some counts of one digit. Only in the last 4 years, I have developed some sporadic petechiae. Most of the time I was the one reassuring doctors that I was doing ok, they seemed to look at it with huge concern and wanted me to restart on medication, which I’ve been declining ever since. In the early years Splenectomy was also put on the table, but since I was feeling not well enough informed about the benefits and risks of this procedure, I also declined it. Unfortunately, I was also advised against another pregnancy.
Luckily, a Portuguese doctor passed me the contact details of Professor Adrian Newland, he has been kind enough to answer some of my doubts over the years, helping me to surpass my need for information. Although Professor Newland reassured me it was possible to carry a successful pregnancy with ITP, I never got pregnant again. I never got the Portuguese doctor's consent, neither did I feel it was safe for me or my baby to do so, in the context of living in my homeland (Portugal).
Then, again facing single figures, I have decided to do an internet search and found the ITP Support Association in the United Kingdom!
So, so happy to have found them and to be able to join. I really found answers to many of my questions!
So happy to realise my fatigue is not just a result of an unnamed imbalance.
So happy to realise that quality of life is the major focus these days! I have been feeling like a lone fighter on that battle over the years and was really feeling I was starting to lose it…
Information and support do empower people! Thank you.
For me, one of the “good side effects” of living with ITP, has been to always have the value of life clear in your mind, and try to live it the best one can. So, I commit myself, every single day, on building a meaningful and happy life. Always looking to cut out the rubbish, really!
So, I live as happy as I possibly can, with my lovely family of four, me, my supporting husband and companion and our beloved children, our 12-year-old loving daughter and our energetic 9-year-old son. People sometimes say, “well, they are like our own children” and we always emphasize: “They are not like our own children, they are our children, period!” So happy to be able to enjoy life!
I would be incredibly happy if I were able to pass this on to our children, the value of looking for happiness and life's fulfilment. That is what really counts at the end of the day!
Let us carry on!