Sunday, January 14, 2018

Case Study #47 - Savanna Punching the Bag

Savanna Pageau was diagnosed with NF at an early age of two. She is the only one in her family who has NF. When she was 11, she developed an infection in her toe. After months of pain and the doctors being puzzled, she had to have her leg amputated above her right knee. The amputation was due to gangrene and was said to be a complication from NF. Over the years she had to have revisions of her leg and other surgeries to have neurofibromas removed. She had to grow up faster than most of the kids her age. Despite being bullied, she didn't allow the bullies to deflate her spirit. Savanna, didn't allow her having one leg to stop her. She was on her swimming and diving high school team, she did open water swims, she rock climbed, she sky-dived. Recently, she started her journey to have an rod implant surgically inserted into her femur, this will allow her to wear a leg without any pain from her neurofibromas. This opportunity will allow her to have her dream come true. She has been using crutches for over 20 years and has wanted to walk more than anything. Savanna's mother, Janie has been involved with NF awareness and has done multiple fundraising events on her own to raise money and awareness. She is always by her daughters side and has never allowed Savanna to give up. 

Savanna, has been involved with the NF Hope Concert, which is based out of Las Vegas. Besides helping the organizers with the event, she has spoken at the concert a few times, sharing her story living with NF. Last November, Savanna went to Nashville to shoot the new NF Network video with others who have NF. She wants to be more than "the girl with tumors", "the girl with one leg", "the girl on crutches". Savanna wants to make an impression. She wants to make a difference to those who live with NF and feel alone. Savanna is a NF warrior, she has overcome many challenges, being pointed and stared at and having moments of "why me". But, she wouldn't change anything. Living with NF made her into the person that she is, she is a fighter and she is understanding. Savanna has also met the most incredible people, because of NF: a family.

Friday, August 4, 2017

Case Study #46 - Jerry Woodworking Outside

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Everyone knows that joining the military will change their life. Jerry Willman did not expect the change to be like this, though. He was attempting to join the Navy and went to the MEPS center. He had two small spots on his left wrist that concerned the doctors. However, they said that if he had them removed, he would be able to try to go through again. With that in mind, he had them removed and tried again. This time, Jerry would hear the news that would forever change his life.

In October 1983, Jerry met a doctor who told him his life would consist of going home and waiting to die. He first referred to this death sentence as Von Recklinghausen’s Disease. Jerry was in shock. He did not know what to do. All of the information then was associated with Joseph Merrick, “The Elephant Man”. Ironically, weeks before his unfortunate diagnosis, he had met a man who first introduced him to “IT”, but he called it Neurofibromatosis (NF). He was living, successfully, with NF, appearing in a sideshow at the Tulsa State Fair. His stage name was “The Man with Two Faces”. One side of his face was about five times larger than the other. His name was Robert “Bob” Melvin. He was a nice gentleman, and Jerry was able to see him perform on more than one occasion. Jerry wondered if he would eventually look like him. Jerry felt mentally lost since he could not easily explain what was happening to him and Melvin was the only other person he knew with NF.

Jerry returned to high school to get his diploma. During the summer, he attended the Upward Bound Program offered by Rogers State College. Since he was unable to join the Navy, and was “sentenced to die”, he chose to return to school and work toward a degree. Jerry obtained his AA and BA in Technical Theatre from Rogers State College. He worked for a short time at Discoveryland in Oklahoma doing the play “Oklahoma!". Trying his hand at counter sales, he moved to Texas. He later worked managing and doing maintenance for a small motel. Choosing to take some time off from the motel, he traveled on a two man construction crew across seven states for about a year. Jerry later returned to Oklahoma, where he is now living and taking care of the house he grew up in. Around, the house, he tinkers with small projects using wood and other materials.

NF has inspired Jerry to do many things. In Jerry's words "I’m always advocating and iNForming people about Neurofibromatosis. I did my first NF Walk in 2010 and have continued to do so since then. I have also began running in the Cupid’s Undie Run in multiple states". Jerry was the top fundraiser for the Cupid's Undie Run in 2017. Jerry passed away suddenly and unexpectedly later that year. His legacy will live on through all who knew him.

Sunday, July 2, 2017

Case Study #45 - Angela Writing Her Blog

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Angela Velasquez inherited Neurofibromatiosis type 1 from her mother, she was diagnosed at birth. She had her first surgery at eight days old to relieve pressure from her right eye caused by congenital glaucoma which was attributed by NF. By the time Angela was 18 years old she had had a total of 17 surgeries. When Angela was 12 years old she had a surgery to remove her right eye because she had gone blind but the eye continued to affect her overall health; shortly after that surgery she was fitted with a prosthetic. The majority of the surgeries that Angela had were reconstructive, the right side of Angela’s skull did not fuse together, which left her with a golf size hole by her temple. This was very dangerous because it potentially left her brain exposed. During her last surgery the surgeon used both a titanium plate and hard plastic mesh to correct the damaged bone and protect her brain. Angela has not had surgery since 2005, but recently spoke to a surgeon to remove fibromas that were bothersome and to do further reconstructive surgery on the right side of her face and skull.

Many would think that a childhood filled with doctor’s appointments, needles, tests and surgeries would be difficult, but for Angela, that was the easy part because she understood from a very young age how important and necessary all of this was. The worst part of her childhood was the bullying of her classmates. Angela felt like an outcast for much of her childhood and adolescents because her classmates were very cruel, calling her names and simply ignoring her presence. Middle and high school were especially difficult because the jokes and shunning became more cruel and frequent. Angela would more often than not get home from school to the arms of her brothers and parents and cry. Thankfully, Angela has always had an amazing support system: two loving parents and two older brothers that can at times be over protective. Despite being harshly bullied by classmates, Angela met and made incredible friends in school that helped her heal and deal with ignorant and mean classmates.

In July of 2012, Angela began writing a blog, “Life with Neurofibromatosis.” She writes about her childhood and how bullying had played a role in her depression even years after graduating high school. She writes about surgeries, scars and how she uses her hair has a protective ‘’shield”. Angela even shared her suicidal thoughts and close attempt. But she also writes about positive and amazingly beautiful aspects of her life, like graduating college, being in love and finding work in her field of study. In December of 2013, Angela graduated college with a Bachelors in psychology and a minor in sociology. Shortly after in March of 2014, she began working for the Crisis Center of Tampa Bay, a nonprofit. She began working as an Intervention Specialist, answering crisis calls, including speaking with individuals that were having suicidal thoughts. In April of 2017, Angela was promoted into Supervisor of that very same department.

Angela wants others with NF to know that they are not just someone with NF, they are an incredible human being with a great purpose. That is a big reason why she writes and shares her story because she does not want others to think that all they have to offer this world if NF. Angela’s determination has given her the strength to not give up and keep pushing forward. She participates every year in the Cupid’s Undie Run to help spread awareness and is not afraid to educate a stranger about NF and why her face looks the way it does.

Wednesday, May 31, 2017

Case Study #44 - Keisha Swimming with Dolphins

"Keisha Swimming with Dolphins" 30" x 24" Oil on Canvas
The 25-year story of Keisha Petrus can be summed up in overcoming the challenges that NF2 threw her way through a multitude of surgical operations, a few radiosurgery sessions and chemotherapy. She was first diagnosed with NF2 when she was 4-years-old through an MRI which showed tumors growing on her hearing nerves. Despite these tumors, Keisha lived a normal childhood until she was almost 10-years-old in 1999. She had her first brain surgery in Los Angeles, Calif., that year. While the tumor on the left side of the hearing nerve was removed successfully, she was left half-deaf and half of her face was paralyzed. Since the first surgery, she had four spinal operations before her death in 2014 – one in Malaysia, two in India and one the United States. She’s also had two radiosurgery sessions in India and underwent experimental chemotherapy at Universiti Malaya Medical Centre in Malaysia. To quote her in her own words, “my duels with NF2 have left me scarred, wheelchair bound and deaf!”

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However, Keisha refused to let NF2 break her or take her down. Indeed, she had a response ready for those who would describe her life as bleak or filled with suffering as she said that "my life doesn’t revolve around the hospital. I have never let NF2 stop me from living my life. To the contrary, I have allowed my condition to provide me opportunities to broaden my horizons, challenge my faith and test my character. So instead of wallowing in self-pity, I embrace adversity to bring out the best in me and overcome the obstacles in my life. Thanks to my condition, I’ve been able to experience the world in a way few people get to see. The fragility of life inspires me to live to the fullest." 

Her quest to live life to the fullest led her to pursue her dreams, from getting behind the wheel and driving as a person with a disability in Malaysia to swimming with dolphins - something she got to do in 2012 when she visited San Diego. Indeed, Keisha did more than just live her dreams, she used her NF2 to encourage people to realize their true potential and to come together and unite in love. As she said in her last public speech before her death when asked to comment on her numerous surgical scars, "I do not see reason to consider these scars a disfigurement of my body. Rather, I choose to see them a testament of how trials and adversity can unite the human spirit. Out of tragedy, my family, doctors, nurses, physiotherapists, caregivers and friends have united time and again to shine forth with the ultimate good within humankind. This is the story behind each and every scar on my body - of a unity of care and love turning tragedy into triumph."

Tuesday, May 30, 2017

Case Study #43 - Avi Processing Apple Watch Orders

Avi David is in his forties and from Israel. He suffers from NF and has from a small age. He discovered the mutation of the disease: coffee stains (cafe au lait spots) and a number of body lesions. As time went on his condition grew worse, Avi had many large and small lesions on his body. He thinks he hay have inherited the disorder from his mother. He does not have any memory oh his mother as she died of cancer when he was only 3 years old. Thankfully, Avi has a wonderful stepmother who helped raise him. Life taught him that there are no free gifts and in the end you get what you need and not what you want. When he was 7 he underwent the first of two NF-related surgeries on his vocal chords. He had another when he was 15, but neither surgery seemed to help with the tumors and all that ended up as a result was that his voice is now hoarse. He also had many small and minor surgeries throughout the years to remove the neurofibromas. The surgeries were of little success. Avi believes that the worst thing about NF is that people will look at him strangely and are afraid of him simply because of his appearance. He also does not like to take his shirt off at the beach and self conscious. He has yet to feel comfortable removing his shirt to go swimming.

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Currently Avi works for a company that sells Apple products. He is in the field of preparing orders and taking orders for Apple for various clients. A year ago Avi made a trip to New York and fell in love with the United States. He wants to move to the United States because he thinks he was born for it. Life is very difficult for him in the Land of Israel. He found many friends who also have the disorder and he got to know, through Facebook, an amazing woman named Rachel who is his inspiration. She encouraged him to send a picture of himself and tell the story of his life. He admires her for all the work she does for the disorder. It will be a great privilege to meet her someday (she feels the same way).

Avi hopes that in the future doctors will find a cure for this disorder and in the meantime the most important thing is to smile as much as possible and adopt positive thoughts: we live only once and always smile even if it is difficult.

Sunday, May 28, 2017

Case Study #42 - Philip Firing up the Grill

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Philip Moss is from Birmingham, Alabama and was diagnosed with NF at the age of 37 following the diagnosis of both of his children in 2012. NF was a completely new term to Philip and the diagnosis was somewhat of a surprise since he has no significant indicators. Since his oldest child has significant tumor issues Philip struggled with feelings of guilt for passing along this condition to his kids.  A condition they will one-day have to consider when planning for their own family.

In retrospect Philip can think of a few clues that could have indicated a need for further tests. In high school he had a tumor removed from his back that was likely only tested for malignancy and nothing else. Philip, like many with NF, often has trouble staying on task and is self-diagnosed as ADD. He was always the shortest in his classes and fact, he took growth hormones through high school. His head is also so big that few hats fit him!

One year following the diagnoses, the Moss family attended the 2013 NF Forum in Nashville where they were all exposed to what this condition means for many and what it could mean for them. Philip and his family are active in the NF community and are eager and happy to share their experiences with others. He loves sharing his story with others and is amazed at how often a friend-of-a-friend gets referred to him. Philip feels fortunate to live in Birmingham where some of the most renowned NF doctors reside. Though he has no tumor issues that require regular check-ups he wants to best treatment possible for his children. Philip’s son is enrolled in a clinical trial through NIH and had significant success in reducing the size of his tumor. Because of his parents advocacy

Since graduating from college Philip has worked on college campuses in three different states. In his current position he works for Mississippi State University in the office of undergraduate admission and scholarships. He enjoys working with students as they are figuring out what they want to become, what college they want to attend, and the opportunities that exist for them to learn and grow in college.

Outside of work Philip enjoys spending time with family and standing over a hot grill with something delicious cooking.

Wednesday, May 24, 2017

Case Study #41 - Neil Cycling the Course

"Neil Cycling the Course" 30" x 24" Oil on Canvas
As a baby Neil Frazer had multiple café au lait spots (birthmarks) that were a concern and on diagnosis proved to be Neurofibromatosis (NF). There were other subtle indications of NF – large head and arm bones that do not extend in the usual manner. None of which were of much concern as a young child. Not much was known about NF then. He was always the smallest kid for his age and and it made him aware of being different or - An Other. Neil had a very delayed puberty which required hormone therapy. Even with the hormone therapy he left high school looking like any other small 12-year-old boy. NF did not really affect his ability to have friends or participate in a wide range of activities. He did graduate high school with a university entrance. At 18 he shot up and grew about half a meter and put on 14kgs. NF is a slow burner and the conditions are progressive. NF has many symptoms or aspects of which he has dodged some – luckily, not being intellectually challenged. Others manifestations were apparent, during his twenties, the café au lait spots faded which was a small mercy because often people thought he was dirty – it’s the small cruelties that hurt. But as the marks faded the fibromas/lumps/tumours appeared and grew and become a nuisance. Neil had the first of the tumors removed in his early twenties. These tumors were on his skull, were in awkward (high wear) positions or unsightly. He was still living a normal happy and well-adjusted life but fretting about his appearance did take up a large part of his mental resources. The staring and rude comments were becoming more frequent. I become an academic exercise and a medical curiosity – my picture was taken by Dermatologists, Neurologists, Endocrinologists, GP’s, and more My Dentist even took a picture.

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To say the knowledge about Neurofibromatosis was skimpy would be a compliment. Neil could not get good advice and plastic surgeons often botched cutting off fibromas. He was living a normal existence and was at university and was beginning to establish himself as an endurance athlete and had a wide and solid circle of friends and training buddies. He took his time in graduating but that had more to do with being distracted by running, cycling and paddling around the Indian Ocean. He was happy, if self-sufficient and independent. Neil remains a happy solitary but engaging. He did have girlfriends and normal relationships but was very aware and self-conscious especially of his torso and back which remain his most affected areas. He did marry in my twenties but that marriage was very short lived and a primary reason for the divorce was the NF and the possible impact on the future and any possible children. It was sad but ultimately a disruption that led to better wife and a more balanced perspective of NF and life. 

Neil has long since loved being underestimated and proving his abilities to doubters. In his early 30’s with a brilliant new wife in tow – he left SA to work in the UK. It was here he met Professor Ferner, the head of Neurology at Guys, St Marks in London. Prof Ferner made him feel understood (Psychologically more than anything else). The explosion of knowledge was very rewarding. Prof Ferner remains a leading NF authority. Plus, she was kind and treated me like an intellectually sound individual. THE NHS were brilliant in managing his NF although the knowledge and experience is still very limited and even their surgeons or specialists were hesitant to operate or “cut” because they had no experience – Neil remains a medical curiosity to this day. By now he tell doctors stuff they are guessing. 

Neil returned to South Africa in 2002 – with his wife and 2 beautiful kids and was ready for the challenges his country likes to pose. This is when the management of his NF become more complex MRI’s, bones, gastro, and lots of cutting. He had found some great doctors, Dr Richard Brink his physician does a brilliant job cutting of fibromas. He recently had several cut off his face and the scars are almost invisible. Dr Lia Mavroard is a fantastic neurologist. 

They say "NF warrior" and they are right – it's warrior class and he is a 52-year-old last man standing gladiator. It’s about confidence and a never ever say die attitude. Luck is a critical factor and his primary luck is having an immense support structure built of a wife, family and a select group of friends. It’s is his impenetrable shield as a warrior – they fight for me, defend me and never let me believe that I am anything but vastly superior. It is vital as an NF sufferer to have a support structure – it is the sacred foundation upon which NF can be dealt with for a lifetime. You need the experts, The Prof Ferner, The Richard Brinks and the Lea Movroardis, Dr Barrows these and other kind and committed medical practioners. The number of times my results have been sent to the medical panel or the weekly discussion board are too frequent to mention. But there have been some unkind, uncaring and stupid doctors. You need love, a wife, special kids, a family, friends and reading, traveling and maybe a hobby. Cycling is his perpetual mistress and largely carved his identity into the bark of the world. It is the pure joy of moving fast and looking like everyone else because at speed we are all blurred. It’s because it’s outdoors. The sheer pleasure of pitting a racing heart against a raging hill is an undying love. 

Neil also enjoys being with like-minded people and watching the sunrise start the day. He was a sponsored athlete in a sponsored car. He has done thousands of races including 7 Cape Epics. He has been to the 4 corners of the world on his bike and he doesn't see himself stopping anytime soon. He has created mountain bike clubs, written for magazines and enjoys some infamy in the cycling community. It proved that he will not be limited. 

In 2009, Neil had a horrific crash and rolled his sponsored Fortuner 6 times and obliterated everything in the car including himself. He escaped by a miracle of athletic conditioning and luck. He was really fortunate (pun) to survive and his ability to fight against NF helped his fight against dying from injuries and infection. In the hospital, Angels came to collect him and it was an attractive offer with a bonus plan and a nice house but I said I had things to do and promises to keep before he died. One was to raise his children, another was to ride with a dying friend across South Africa in the Jozi2C and another is to help others combat NF. A friend said, “God wants you to do stuff, don’t waste the chance”. Today I start by being an NF fighter.