CONNIE'S STORY

Connie's Story

When I finally had a chance to meet Connie in person several years ago, it was after many months corresponding through a variety of means from AVMSurivors.org to good ol' email. I was drawn to her because of her unyielding determination as a mother to be as knowledgeable as possible about her son's condition (AVM) and make the best choices for his care. We finally met at the annual International Symposium on Hemangiomas and Vascular Malformations of the Head and Neck in Little Rock, Arkansas, I was moved by how observant, how supportive, and how motivated she was. She encouraged me to keep on raising awareness and sharing our stories. I am honored to shed a little more light on hers.

Hometown: Pennsylvania

When my child was born, I thought: How blessed I am to have this child and what an easy birth compared to my first!

As a parent, I’ve advocated for my child’s health by: Educating myself and reaching out to the most knowledgeable doctors experienced with caring for patients with the condition. Also connecting with families who are also effected by the same condition.   

In 10 years, I will have:  Aged 10 years with teenagers!

If I could change one thing about the world, I would: This is a hard question...I am tending to think towards big miraculous changes such as no natural disasters, diseases, etc. 

My favorite quote/scripture/affirmation statement is:

I think a hero is an ordinary individual who finds strength to persevere 
and endure in spite of overwhelming obstacles. 
~ Christopher Reeve

1) Describe the medical challenge of the person for whom you provide care? What was the first sign?

The challenge of rare medical conditions is finding knowledgeable medical professionals locally and making decisions on your course of action for treatment when all doctors do not agree on the same treatment or when the treatment is experimental. The first sign was unexplained bleeding and inflammation that could not be explained by doctors.

2) How did he/she eventually come to receive treatment?

After much research, consultations and learning of many other families experiences, a decision was made to treat.

3) Who have been his/her main doctors, where has he/she been treated, and how has the care been?

Dr. Richter in Little Rock, AR.

 
4) How do you feel his/her health will progress in the future?

This is uncertain.

5) How has caretaking for someone with a medical challenge positively impacted your life?

It gave me a new perspective on life and how I live it.  I no longer worry or allow myself to be bothered by trivial things. 

6) What has been the biggest challenge with battling a medical challenge from a caretaker’s perspective?

Watching and knowing that this is a battle my child will face his entire life. 

7) What do you think a documentary or other content about those surviving a medical challenge can achieve?

It will bring awareness to the condition and teach others that the people and children dealing with rare conditions are Super Heroes!  It takes super strength to get through the obstacles on such a journey, living with a rare complicated disease.  People need to see them as a Super Hero not a poor thing with a medical problem.

8) What are your hopes for the future of research for the medical challenge involved?

My ultimate hope is that a cure will be found. Until then, I hope for better treatment options to help the condition.

9) What has been the biggest lesson you've learned throughout your journey thus far?

Sometimes Doctor's and Insurance Companies have to be educated on the rare condition you are faced with.

10) What are three things you wish you had known as a caretaker or have learned that you feel could help other caretakers in your position?

1 - Do not do any invasive testing until you know it is absolutely necessary at that current time.

2 - Research, Research, did I say Research? Before your consultations. Rare conditions are sometimes as confusing to doctors as they are to us.  Learn as much as possible through medical reports and more importantly from those who have already been on the same medical journey.  Share the information with your doctor's and others.

3 - Keep a record/file of any most recent medical test (MRI's, etc) on hand, in case you need them in a hurry.

SILVIE'S STORY

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?

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...

LOUISE'S STORY

Louise's Story

When my doctor James Suen first told me about Louise Brent during a check up appointment, I didn't have time for any initial reaction. He asked me if I wanted to meet her, and she walked in minutes later with a gusto of a young girl and the seasoned self assurance of a sage. We spoke briefly but the impression she made stays with me. She had some severe disfigurements to her face but had just been through a quite radical procedure to remove large sections of her AVM and begin reconstructing her face. So through the bandages, swelling and discomfort was a smile, joy and optimism. Louise was in the U.S. receiving treatment by one of the best surgeon's in the world for her disorder. She was connecting with new people like other survivors including me. She was as determined as ever to fight, for her life, her peace and her health.

Hometown: York, England
When I was younger, I wanted to be: A hairdresser (goodness knows why)
In 10 years, I will: Be AVM free and have a full, active life.
My life long goal is to: Be a good grandmother to my four grandsons. 
If I could change one thing about the world, I would: Have no more wars and more women running countries.
My favorite quote/scripture/affirmation statement is: "Never say never."

1) Describe the type of medical challenge you have? What was the first sign? 
I have a facial AVM. The first sign was a faint red line down my forehead which disappeared. Then when I was 45, I noticed a pulse in my cheek.

2) How did you eventually come to receive treatment?  
I received incorrect treatment in England, and the embolizations were a catastrophe. I researched and flew out to the United States to Dr Suen. 
3) Who are/were your main doctors, where are/were you treated and how has your care been?  
My surgeon now is the wonderful Dr. Suen in Little Rock who is amazing and got my health back.
4) How do you feel your health will progress in the future?
I hope surgery will put my face right and rid me of my AVM.

5) How has having a medical challenge changed your life?   
It's made me appreciate life and determined to lead a normal life. It's made me aware of how short life can be.

6) What has been your biggest challenge in the battle with a medical challenge?
It has been finding the right treatment and docto.

7) What do you think a documentary about those surviving a medical challenge can achieve? 
That you're not alone and never give up hope Hope, advice and comfort 

8) What are your hopes for the future of research for your medical challenge?
Research into drugs to save the need for invasive surgery.

9) What has been the biggest lesson you've learned throughout your journey thus far?  
Don't always trust medics. Do research and follow your own instincts. Never say never!  

10) What is your proudest accomplishment?
Having my children and now four grandsons. My daughters. Working with young offenders and unemployed and helping them. Giving, helping and listening to others is so rewarding. Nothing can make me happier!

ALIA'S STORY

Alia's Story

Talent, beauty and brains. Alia is a triple-threat in a teenage package. When we met almost two years ago, I could tell she was a young woman with goals and dreams well beyond her current fight with AVM. She was determined not to allow her health challenges to speak for who she was. In addition to having a dazzling singing voice, she writes songs that speak to the very heart of our experiences as survivors and the sublimity of tomorrow's promises. I've been blessed to hear some of her work and hope to feature it on More Than Skin Deep. For now, please enjoy learning more about Alia's journey.

Hometown: Muskego, Wisconsin

When I was younger, I wanted to be: A doctor AND a musician.

In 10 years, I will have: A big family.

My life long goal is to: Make some sort of impact on the world and the people around me.

If I could change one thing about the world, I would: This made me think a lot... I would want to change the way people think. Positive thoughts only.

My favorite quote/scripture/affirmation statement is: 

"Every hardship comes with ease."

 
1) Describe the type of AVM you have? What was the first sign?

My AVM is located in my right foot. The first sign was blood marks and swelling on my foot, eventually leading to a lot of pain. 

2) How did you eventually come to receive treatment?

After seeing numerous specialists, I was taken to Northwestern for a couple surgeries that were unsuccessful. They attempted homeopathic medication and acupuncture. Then Doctor Patricia Burrows was brought to our attention in late 2014/2015.

3) Who are/were your main doctors, where are/were you treated and how has your care been? 

Doctor Burrows is my main doctor, and she has been treating me since March of 2015 until now. The surgeries her and her team have been providing me with a great deal of relief. 

4) How do you feel your health will progress in the future? 

I believe if I keep on top of these surgeries with Doctor Burrows that eventually my AVM will stay away for a long period of time. Eventually, it could even disappear. I do believe in miracles! 

5) How has having an AVM changed your life? 

It definitely forced me to grow up a lot faster and gave me a new perspective. It taught me to be grateful for the health I do have. My AVM is completely hidden, and it reminds me that just because someone looks fine on the outside, it doesn't mean they're not dealing with something just as big as you are. It keeps me grounded, honestly. 

6) What has been your biggest challenge in the battle with AVM? 

Chronic foot pain is distracting. It was hard for me in high school especially, and I had to graduate early and take time off of college for multiple surgeries in less than a year. It got tough at times being in bed for such long periods of time for recovery and feeling like you don't have much to do at that time.

7) What do you think a documentary about those surviving AVM can achieve? 

It will definitely spread awareness. Anyone I've talked to about AVM besides doctors, they have absolutely no clue about it, which makes it impossible for them to really even try to understand anyone with AVM's point of view. A documentary would help people get a little better of an understanding what AVM even is and how rare it is. 

8) What are your hopes for the future of AVM research? 

I hope soon research will show new ways for cures for multiple types of AVMs, and not drug therapy, more natural ways.

9) What has been the biggest lesson you've learned throughout your journey thus far? 

That God gives his strongest soldiers the toughest battles! 

10) What is your proudest accomplishment? 

I'd have to say staying active throughout all of this. It's funny because I was never active until right before I was diagnosed. I was so worried that it was going to stop me from working out, but it did the exact opposite. I try to get a workout in at least 4/5 days a week now, and I've never felt better physically than I do right now!

LAURETTA'S STORY

Lauretta's Story

My parents sat patiently in the chilly waiting room of the surgery unit at the University of Arkansas for Medical Sciences as they had done many times before. I'm sure they huddled close together and may even have started to nod off some as minutes turned to hours. Then my mom saw someone she thought looked like me from behind - slim build, black hair, brown skin. When the young woman turned around, my mom realized that the person also had similar physical characteristics - a drooping right cheek, a bulging jaw line, and determined eyes. Her name was Lauretta. Although she was having trouble communicating orally, she and her caretakers began to tell my parents about her amazing journey. She had come from Nigeria to further her education, and her classmates had rallied around her to help raise funding for her to finally receive proper treatment for her vascular defect (similiar to an AVM but affecting the lymph nodes verses arteries and veins). Lauretta will be featured in the upcoming documentary, More Than Skin Deep, sharing details about her journey. For now,  learn more about Lauretta below In Her Own Words.

1) Describe the type of vascular defect you have? What was the first sign?

I was diagnosed with lymphagioma or lymphatic malformation. According to my parents, I had a swelling on my neck close to my face.   

2) How did you eventually come to receive treatment?

According to my parents, the medical condition was first noticed at birth. I was immediately referred to a pediatrician. After several years of unsuccessful surgeries, I was referred again to a couple of other physicians. There was little to no success. When I came to United States for graduate studies, a friend of mine found the physician that is handling my treatment now. 

3) Who is your main doctor, and how long has he/she been treating you?

Ever since I came to the United States,  I have been under the care of Dr. James Suen at University of Arkansas for Medical Sciences. The care has been wonderful and quite successful. 

4) How do you feel your health will progress in the future?

My hopes are high. Being in the right place to receive the right type of treatment, I see myself getting better. 

5) How has having a vascular defect changed your life?

It has affected most aspects of my life most especially my social life. I don't talk to everyone only to those that are understanding. Also, I have to work harder than most people in order to proof I have equal ability. Nevertheless, all these have made me a stronger person. I am better at making the best out of every situation I find myself in. 

6) What has been your biggest challenge in the battle with your condition?

My biggest challenge has been that of speech.  When I was still in my country, I had little to no issues communicating with other people.  On coming to the United States, I was faced with the challenge of communication. Most people say they can't understand me. This has affected me in that it has made me quite picky when it comes to talking to people in a social environment. I only talk to people I am sure can understand me clearly. In school, some of my instructors understand me, and they encourage me. Others who don't understand, I use some other form of communication. I am actually working on improving on my speech nonetheless. 

7) What do you think a documentary about those surviving a rare defect can achieve?

I think a documentary will help increase the awareness of the medical condition. 

8.) What are your hopes for the future of vascular research?

I hope that more attention will be given to the research and more resources channelled in this direction so that a permanent treatment can be developed.

9) What has been the biggest lesson you've learned throughout your journey thus far?

I have learned several lessons so far and the biggest of them is not to give up on myself or in any situation, to believe in God and in myself. 

10) What is your proudest accomplishment?

My proudest accomplishment is that I have overcome the stigma of having a medical condition.

RYAN'S STORY

Ryan's Story

As I first began the process of directing our upcoming documentary More Than Skin Deep, at times slow but always steady and satisfying, I would meet someone every so often that propelled me forward and further solidified the importance of the project. I still do. Ryan has certainly been one of those Godsends. Ryan's mother found me through social media and invited me out to speak to Ryan's school. I decided to also film the process. The results of my inspiring conversation with Ryan was a short documentary on him that shares a title with this post. His honesty, vulnerability, strength, kindness, intelligence and perseverance all stood out to me. His transition into young adulthood mirrored mine (and maybe yours) in some fundamental shared experiences between survivors of vascular anomalies. o I will detail more about the success of his short film soon. In the meantime, enjoy learning a little about Ryan. Be encouraged!

1) Describe the type of AVM you have? What was the first sign?

My AVM was at my skull base. As it grew, it destroyed the roof of my mouth, sinuses, and a part of my right eye socket. The first sign came just after my birth: my mom had commented that my right cheek was slightly bulging, but the nurses dismissed it as an "optical illusion."

2) How did you eventually come to receive treatment?
My parents initially spent several years flying around the country, trying to find a hospital that could treat me. But they eventually found the University of Arkansas for Medical Sciences after reading about their world-class doctors in a magazine article.

3) Who is your main doctor and how long has he/she been treating you?
My main doctor continues to be the wonderful Dr. James Suen, who has operated on me since I originally went to UAMS as a baby.

4) How do you feel your health will progress in the future?
The AVM itself has largely been removed, but it still gives me reoccurring problems as it has left me disfigured and unable to speak properly. The future most likely will entail ensuring that AVM does not return and continuing with reconstructive surgery that will improve my quality of life. One of my major hopes is that I will be able to receive better prosthetics that will better help me with my speech.

5) How has having an AVM changed your life?
I've had to persevere through the challenges that the AVM has brought me, and I think that those challenges have given me very unique experiences that have served to strengthen my character.

6) What has been your biggest challenge in the battle with AVM?
Because I was so young when I had the majority of my AVM removed, I cannot remember when I was undergoing the worst of my surgeries. So for me, the hardest part about the AVM has actually been the aftermath of the AVM, which includes residual medical problems as well as ongoing social problems.

7) What do you think a documentary about those surviving AVM can achieve?
A documentary about AVM has the ability to educate people about the effects of the rare medical condition and demonstrate that those affected are not defined by it.

8.) What are your hopes for the future of AVM research?
In the future, I hope to see better detection for AVMs to ensure that they are caught early before they can do any lasting, permanent damage.

9) What has been the biggest lesson you've learned throughout your journey thus far?
You are never alone. There is always somebody else out there who is going through the same ordeal as you.

10) What is your proudest accomplishment?

I have managed to excel in school and be an inspiration to others in spite of all of the challenges and obstacles with which my AVM has presented me.