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.

                                                                                   

                                                                      

NABIL'S STORY

Nabil's Story

A few months ago, I had a misstep regarding the recovery from a recent AVM surgery. I was in Memphis, TN staying with my family. We took the two and a half hour trip to Little Rock to have my doctor, James Suen at the Univeristy of Arkansas for Medical Sciences, take a look. As sometimes happens, my thoughts were far off. Not in "the South" at all but out West, in California, as I was anxiously awaiting my return to LA where I now call home. Well, the appointment went fine, and we came up with a plan to get everything back on track as we always do.  After my appointment, I was still completely absorbed in my own momentary challenges. I walked out into the waiting room and saw a young man around my age. He turned slightly toward me, and I noticed the facial signs that we shared a similar form of Arteriovenous Malformation, our rare birth deft. Nabil Rahman was introduced to me through a mutual friend, and although I could tell he was slightly shy or maybe just reserved, he was engaging and inspiring. I was able to put my own angst into perspective while I listened to him discuss his journey. I wanted to give him a chance to share more of his story in his own words...

"[The picture above is me] giving farewell to Dr. Suen, undoubtedly the most kind and humble hoctor that I have come across in my life. My life was a mess, absolutely distraught when he shown me the hope of light. There was a time I locked myself inside the room for 6 months thinking about committing suicide every now and then. Standing near the Lake in Baridhara DOHS and thinking of jumping off and ending my life. I had no confidence when I left school. I was heartbroken. My friends never understood my feelings. I felt like a laughing stock at school.Then through the AVM Survivor site, I met people who had a similar condition like me.They gave me a lot of support, and through them, I found out about Dr. Suen. At that time, my situation had worsen. My facial nerves were getting damaged which caused suicidal pain. Dr. Suen told me to come to US as soon as possible as my life was in real danger. I had to wait 6 months to get visa. Those 6 months waiting were the worst days of my life! When I reached Little Rock, I met Dr. Suen just coming out from a surgery looking cool as ever. Even though, there isn't a cure for facial AVMs, he gave me assurance that everything was gonna be fine. I believed in him. My first surgery was in May 20 2013, which was the most important surgery of my life. It took 16 hrs to save my facial nerves from getting fully paralyzed.
There was partial paralysis at first. Then I had several surgeries over the next 2 yrs to get my life to a steady path.
The last 2.5 yrs. have been tough for me. But the good news is my AVM is stabled for now. Now I can concentrate fully on my college life. Finishing my graduation in the next 4 yrs will be my ultimate target.
I will always be grateful to Dr Suen and his team for giving a new painless life!

Hope to see you in January!

Fingers crossed!"

~ Nabil

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

I have a congenital Vascular Malformation called an ArterioVenous Malformation involving entire right side of my face and jaw. Bleeding from my lower gum was the first real sign that I had.

2) How did you eventually come to receive treatment?

I was treated with several glue embolizations and surgeries in Singapore and Bangkok with no improvement.Then I was referred to Dr. Suen in the US from the doctors in Singapore and through AVM Survivors .org members for further treatment who is specialized in handling complex AVMs.

3) Who will be your main doctors now that you've left the states?

I will try to come by for a check up each year. There are a couple of specialized maxillofacial surgeons in Dhaka whom I knew had handled facial AVMs in the past. They [have known about] my condition from the beginning. I will take their advice and check in regularly for my own safety.

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

At the moment, my AVM is stable. Basically, during the puberty stage, AVM tends to grow at a faster rate. Now that I have surpassed that time frame, I hope it remains the same and doesn't grow back aggressively. But there is a lot of uncertainty about my health in the near future which I am concerned about.

5) How has having an AVM changed your life?

Having an AVM has helped me to be more patient, thankful and appreciative towards life. I thank the Almighty who gave me a loving and supportive family. My parents have been with me throughout my journey fighting AVM. Without their support, I could have lost faith in myself a long time back.

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

There is not one, but two challenges battling AVM. Handling constant pain and depression have been tough for me. When the swelling became more apparent. Whenever I would go outside my house, people used to stare at me continuously and ask me questions about whether I have mumps, cancer or whether it spreads through physical contact or not. I used to be bullied a lot at school calling me a blow cheek or doing something to aggravate me. The feeling of being a different looking guy than the rest made me feel miserable. Looking back, school life really dented my confidence.

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

A documentary will help to increase more awareness.There have been many incidents where people came to me in public places asking about my condition out of curiosity. For research, you need funding. Cancer is well known everywhere in the world. You can get Cancer research funded quite easily. But that's not the case with AVMs which is very rare and can be more deadly than cancer.

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

I really hope disciplinary AVM clinics not only in the US but across the globe can find a cure. The treatment is not a certain one depending upon the location of the AVM, it might even vary from case to case.

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

Life is beautiful if you know how to live it. We all know life is full of struggles; everyone has to go through hardships at some point some way or the other. But what is more important is never to get bogged down, always have faith, be brave and move forward in life. Always have a purpose in life. With determination and strong will power, no one can stop you from achieving your ultimate goal.

Me, Rafa (story to come) and Nabil bundled up but on the mend. The 3 survivors ;)