Silvie's Story
Silvie is a woman who ROCKS! She is the founder of an organization which supports patients with AVMs in the Czech Republic. She is also an inspiring AVM survivor, wife and mother. As I embarked on the gaggle of activities needed to successfully premiere my first short documentary, Ryan's Story, on an teenage AVM survivor, I was both moved by and enthusiatic about the note she sent me about her interest in the project. I was even more impressed when she told me her husband was translating all of my messages (written in English), so that she could respond. In the midst of all that she has on her plate, Silvie continues to seek new opportunities to connect with patients, encourage their efforts, and spread knowledge about rare disease.
Hometown: Prague, Czech Republic, EU
When I was younger, I wanted to be: A doctor. I wanted to understand my disease a bit more. Although I had many medical problems, I was able to finish my bachelor studies on the faculty of medicine at Charles University.
In 10 years, I will have: I do not dare to have positive vision. I do not plan. I live in present.
My life long goal is to: I want to have a happy family, and I want to be able to raise our little daughter.
If I could change one thing about the world, I would: For me this question is wrongly formed. If I am able to change anything, I always try. If a question is “what if,” and it is not in my capabilities I do not care about it. I do everything to better my health condition because without that I would not be able to change anything.
My favorite quote/scripture/affirmation statement is: “One act is worth a thousand words.”
1) Describe the type of AVM you have? What was the first sign?
I have AVM on the left side of my face and my left ear. The first manifestation was at the age of 16 when I started bleeding massively. Until that time, I was not aware of my disease.
2) How did you eventually come to receive treatment?
From the age of 16, I had been treated here in Prague. I had gone through tens of embolizations. After 4 years, doctors told me that they cannot continue these interventions and that there is no other treatment in Czech Republic. Once I was hospitalized again because of bleeding. One of the doctors who saw me had an educational stay in Switzerland a year before and knew that in University hospital in Zurich they are trying to treat vascular anomalies. He contacted professor A. Valavanis, and from that time, I have been treated there.
3) Who are/were your main doctors, where are/were you treated and how has your care been?
Currently I have been treated by professor A. Valavanis in Zurich (Switzerland). My AVM cannot be treated surgically due to the location of the AVM, so I only have interventions by embolization with tissue adhesives which prevents growth of AVM.
4) How do you feel your health will progress in the future?
I have AVM on the left side of my face and my left ear. The first manifestation was at the age of 16 when I started bleeding massively. Until that time, I was not aware of my disease.
2) How did you eventually come to receive treatment?
From the age of 16, I had been treated here in Prague. I had gone through tens of embolizations. After 4 years, doctors told me that they cannot continue these interventions and that there is no other treatment in Czech Republic. Once I was hospitalized again because of bleeding. One of the doctors who saw me had an educational stay in Switzerland a year before and knew that in University hospital in Zurich they are trying to treat vascular anomalies. He contacted professor A. Valavanis, and from that time, I have been treated there.
3) Who are/were your main doctors, where are/were you treated and how has your care been?
Currently I have been treated by professor A. Valavanis in Zurich (Switzerland). My AVM cannot be treated surgically due to the location of the AVM, so I only have interventions by embolization with tissue adhesives which prevents growth of AVM.
4) How do you feel your health will progress in the future?
Unfortunately, I have gone through many disappointments and no doctor has been able to prognose anything. I am trying to have hope in some kind of stabilization of my health condition at least.
5) How has having an AVM changed your life?
In almost everything. My current life revolves around my health condition and everything I do and where I am is affected by AVM. I have to say that for the most part, I feel that AVM affected me in positive way. I have had many beautiful moments and have met many interesting people that inspired me. I can appreciate and enjoy little things, enjoy every moment when I feel OK and do not have any pain or bleeding. We even had our first child born last year a daughter who is the biggest miracle!
6) What has been your biggest challenge in the battle with AVM?
There were many challenges, and I am proud of myself that I was able to handle all of them with the help of God. It is hard to say which was the biggest. Currently, I feel that one of the hardest is to look to the mirror at myself and reconcile how AVM changes and damages my face. This is one of the most painful facts.
7) What do you think a documentary about those surviving AVM can achieve?
My fingers are crossed for this project. I think that based on viewing patients lives with AVM, we can achieve not only bigger professional and non-professional public awareness, but also bigger investments into research of AVM. The documentary can also be used for educating students on medical faculties, and hopefully, some young doctors can be inspired by it.
8) What are your hopes for the future of AVM research?
I am very interested in research conducted by Dr. Suen regarding treatment by stem cells gained from amniotic fluid. If there ever was a working treatment for people with AVM that would be worth a Nobel Prize! :) I also hope that doctors will be able to discover really effective drug to stop creation of new vessels or suppresion of spontaneous bleeding from AVM without any uncomfortable side-effects.
9) What has been the biggest lesson you've learned throughout your journey thus far?
Patience, self-control and courage. Without these capabilities, one is not able to survive for longer period of time.
10) What is your proudest accomplishment?
My husband and daughter. However, this would not be possible without many previous smaller or bigger achievements. Now only the health is needed...
5) How has having an AVM changed your life?
In almost everything. My current life revolves around my health condition and everything I do and where I am is affected by AVM. I have to say that for the most part, I feel that AVM affected me in positive way. I have had many beautiful moments and have met many interesting people that inspired me. I can appreciate and enjoy little things, enjoy every moment when I feel OK and do not have any pain or bleeding. We even had our first child born last year a daughter who is the biggest miracle!
6) What has been your biggest challenge in the battle with AVM?
There were many challenges, and I am proud of myself that I was able to handle all of them with the help of God. It is hard to say which was the biggest. Currently, I feel that one of the hardest is to look to the mirror at myself and reconcile how AVM changes and damages my face. This is one of the most painful facts.
7) What do you think a documentary about those surviving AVM can achieve?
My fingers are crossed for this project. I think that based on viewing patients lives with AVM, we can achieve not only bigger professional and non-professional public awareness, but also bigger investments into research of AVM. The documentary can also be used for educating students on medical faculties, and hopefully, some young doctors can be inspired by it.
8) What are your hopes for the future of AVM research?
I am very interested in research conducted by Dr. Suen regarding treatment by stem cells gained from amniotic fluid. If there ever was a working treatment for people with AVM that would be worth a Nobel Prize! :) I also hope that doctors will be able to discover really effective drug to stop creation of new vessels or suppresion of spontaneous bleeding from AVM without any uncomfortable side-effects.
9) What has been the biggest lesson you've learned throughout your journey thus far?
Patience, self-control and courage. Without these capabilities, one is not able to survive for longer period of time.
10) What is your proudest accomplishment?
My husband and daughter. However, this would not be possible without many previous smaller or bigger achievements. Now only the health is needed...
