Chanelle hits the news again

I just love this fireball Chanelle.  You have seen her featured here in several posts (here, here, here, and here). Well, here she is again, and I'm very proud of her. This brought tears to my eyes. Keep going, Chanelle!  ~mm

Grad perseveres to earn degree

May 8, 2012 12:10 am

Chanelle Felder's struggle with Cushing's syndrome prompted her to pursue a career as a patient advocate. Felder took ballet in 2008, during her fight with disease. Chanelle Felder battled cyclical Cushing's syndrome in high school. She graduates from Germanna Community College this week and is preparing to pursue a bachelor's degree at a Virginia university this fall.

By PAMELA GOULD

Chanelle Felder found her mission in life through the mysterious illness that left her mind in a fog, her body bloated and her high-energy lifestyle on hold.

"I was directionless before," the 22-year-old said. "Now I have a laserlike focus on what I want my legacy to be and what I want to get out of life."

Felder, who graduates from Germanna Community College on Wednesday, was 16 when her slender 5-foot, 7-inch frame started expanding inexplicably.

She began having crying spells, waking in the middle of the night, and suffering numbness and pain in the feet that for years had carried her gracefully across dance floors.

Clumps of hair started falling out, she became sluggish, and her normally sharp mind started going blank.

Felder was a Mountain View High School junior, cheerleader and honors student when the symptoms began. She found them shocking and frightening.

Doctors offered possible diagnoses such as a thyroid disorder, but none fit until the North Stafford teen stumbled upon a program on the Discovery Health channel.

"My turning point was an episode of 'Mystery Diagnosis,'" she said.
A woman named Sharmyn McGraw was describing the symptoms of Cushing's disease. Felder immediately saw her own situation.

She went online, did research and told her parents that's what she had. The rare disorder afflicts 10 to 15 of every 1 million people. It's even rarer in children and adolescents.

Though her parents supported her self-diagnosis, doctors were slower to get on board. But after medical tests confirmed it, she underwent brain surgery in September 2007.

That first surgery removed a benign tumor from her pituitary gland. However, the symptoms returned, prompting a second brain surgery to remove more tumors in January 2009.

It turned out that she had cyclical Cushing's syndrome, a condition in which the symptoms disappear and then return.

When the second surgery didn't resolve the problems, Felder opted to have both adrenal glands removed in April 2010.

That procedure eliminated the Cushing's symptoms because it's driven by the hormones produced by those glands, which sit atop the kidneys.

But removal of the adrenals meant she was without the hormones they produce, which, among other things, help people cope with stress.

She now takes four medications daily to regulate her endocrine system and keeps a close watch on her stress level. But her bubbly personality and energy are back.

MOVING FORWARD

Felder graduated from Mountain View High in June 2008, nine months after her first surgery.
Then, on a doctor's advice, she waited a year to start college.

Her parents urged her to ease into her courses, so it's taken her three years. However on Wednesday, Felder will walk across the stage at the Fredericksburg Expo and Conference Center to receive her associate degree in arts and sciences.

"She's been inspirational to other students," said Judi Johnson-Bartlett, coordinator and student adviser at Germanna's Stafford Center.

Johnson-Bartlett rattled off adjectives to describe Felder: determined, hard-working, dedicated, persistent. "The sky is the limit for her."

Felder majored in science while taking classes on the Germanna campus in Spotsylvania County and at the recently opened Stafford Center.

She frequently drew on her experience for class projects and presentations.

The time spent researching her diagnosis and staying abreast of the steps in her treatment gave her an understanding of medical science and terminology she wouldn't have learned otherwise.

It also redirected her interest from a career in social work to one in which she plans to serve as a patient advocate.

If it hadn't been for a dash of teenage defiance, the support of her parents, and the prayer and encouragement of people at Mount Ararat Baptist Church, Felder said, she'd probably still be suffering.

That's why she wants to study the dietetic field next fall when she attends Virginia Tech or James Madison University and why she's also interested in communications.

"My ultimate legacy will be to get information out about this disease and about other diseases like this," Felder said.

She also wants to provide the support for others that she received during her medical ordeal.

She's already part of an online network of Cushing's patients who share their stories; some of them have been heartbreaking.

She said some people have been ostracized by relatives who don't understand their symptoms, or worse yet, suggest they're lying and just lazy when their weight balloons and they lack energy.

Others have died from symptoms related to the disorder.

Many, she said, just resign themselves to a life of suffering after medical professionals brush off their symptoms or aren't familiar with the disorder.

Felder said her mission crystallized as a result of Facebook communications with a man in California with Cushing's syndrome.

She shared the treatment she'd undergone, and in her he found hope and committed to the same path.

He underwent surgery and messaged her recently to say, "You saved my life."

Felder became teary as she shared that encounter.

"Just to think I was just a 16-year-old girl. For me to go through that and actually help someone, it made me see it wasn't in vain," she said, pausing to keep her composure.

"That's why I went through it--to help people."

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Germanna Community College will hold its spring graduation ceremony at the Fredericksburg Expo and Conference Center on Wednesday at 7 p.m.

Chanelle Felder is scheduled to sing the national anthem as part of the commencement exercises.

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Copyright 2012 The Free Lance-Star Publishing Company.


A special thanks to Pamela Gould (540/735-1972, pgould@freelancestar.com) for the excellent story.

Day 22: Rare Hormone Disorder Brings New Hampshire Woman To OSUMC

A rare, life-altering disease brought a New Hampshire woman to The Ohio State University Medical Center. Her story is stunning and NBC4 takes you inside the rare disease and her cure.

Published: May 02, 2011

By Denise Yost (stories@nbc4i.com)

A rare, life-altering disease brought a New Hampshire woman to The Ohio State University Medical Center.

Concetta Troskie was a young, aspiring actress and model with a love for the stage.

But her picture changed when she was diagnosed with Cushing's Syndrome. It's a rare and mysterious disease that took years to diagnose.

At age 34, Troskie was struck with severe fatigue, anxiety, vertigo and muscle pain, and she could barely speak at times.

"The most challenging one was speaking since I'm such a communicative person and social relationships are so important," Troskie said.

She said she felt like her mind and body were falling apart. In a way, they were.

"Then of course, the physical ones, those are devastating, because your hair starts falling out and you get facial hair and acne and I gained about 70 pounds," she said.

After years of trying to figure out what was going wrong, she got the diagnosis of Cushing's Syndrome, a hormone disorder caused by a benign tumor on her pituitary gland.

"It's just this tiny little piece of disease that is causing so much trouble," said Dr. Daniel Prevedello of The Ohio State University Medical Center.

Dr. Prevedello, a brain surgeon, found a way to remove the tumor through Troskie's nose.

"While we introduce that device through the nose, look at the screen and then we perform the dissection, find the tumor and remove the tumor that way," Dr. Prevedello said.

With no incisions, the surgery meant an easier and faster recovery for Troskie.

"Take it easy and let my body recover on its own time, and acting will come back when I start feeling like I can stand on a stage without falling off it," Troskie said.

Troskie's recovery is not easy. During the next six months, her body will be getting back to normal, but doctors say that within a year, almost all of her symptoms should be reversed, as if she never had Cushing's Syndrome.

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You can find original article here: www2.nbc4i.com

Note:  Concetta is the third Cushing's patient that I know of who has had success with Dr. Prevedello. We are all thankful to him for his dedication to our Cushie sisters, and thanks to Concetta for sharing her story for all the world to see!  When we tell our story, we save lives. I truly believe that.

Day 19: CHANELLE in her own words

Take a look at the story of my friend Chanelle, a darling and daring Cushie survivor. I admire her so much for her courage, positivity, wisdom and fighting spirit.  This girl has *moxie*; so much, in fact, that it will take several posts to tell her beautiful story.

late 2006 

9-20-07 (1st pit surgery)

 

Early 2009

September 2010

November 2010

January 2011

November 2011

February 2012

Early 2006 - I was a happy, healthy 16-year-old cheerleader at my high school. I made great grades, had tons of friends and had just won Wildcat Idol, a singing competition at my high school.  I enjoyed writing poetry and even won a contest for an essay I had submitted, also, for my school. I was in chorus and advanced academic classes and just loved being involved in activities like a normal teenager would. Overall, I had a pretty busy and fun life with my major problems being remembering to study for tests and what outfit I would wear.

Towards the end of the year, though, I started noticing that my clothes were getting a little tighter and by the holidays, my dad and close friends were commenting that my face looked different and that I looked like I had put on weight. Now, since I have danced since the age of two and had the typical "dancer body" all my life, I was shocked to hear anyone say I looked different. I could always eat whatever I wanted and never gained weight, so that was devastating. I soon found myself putting away my normal jeans and wearing simple t-shirts and my mom's old pants to school. I soon had to stop cheering since I had zero energy. School was no longer fun since I had no desire to put effort into my appearance or socialize. On top of my ever-changing looks, school and learning, which I always found enjoyable, were becoming impossible. I found myself up at all hours of the night with insomnia, struggling to write essays that I would usually complete in an hour or two. Needless to say, 2006 was not a good year for me. To add insult to injury, both of my grandmas passed away, a great aunt of mine died and one of my old pastors also passed within months of each other, leaving us to take in two of my cousins who lived with my grandmother on my mom's side. So, within a year, my looks, my health and my life changed and I thought my life was falling apart. 

By 2007- I knew that things were terribly wrong. I was struggling to just make it through each day with my depression, insomnia and myriad of strange symptoms. I started keeping a log on MS Word of all the things that would happen to me every day: new stretch marks, sudden outbreaks of acne, tiredness, rashes, hair falling out, etc. I kept that log with the hopes that my doctors could see a pattern and hopefully fix me. At this point, I was also seeing a psychologist, a psychiatrist and my primary care physician who were keeping me on anti-depressants, acne medications and other things to try and repair my quality of life. (Of course, as we know, Cushing's can't be cured with pills and creams... but I had yet to discover my disease).

So I carried on with my treatments and my miserable life. I would simply go to school, come home, take a two hour nap from exhaustion and then be up all night until the next day of school, every day, getting a little heavier and more depressed. That was my existence for months.

Mid-2007- By this time, I had gotten so tired of people not recognizing me (since I had gained about 30 pounds) and went to my primary care physician who literally told me she had no clue what was wrong with me, so she would refer me to a specialist (and her mentor), a pediatric endocrinologist. So I went home and (by the grace of God), I happened to turn on the TV and flip to the Discovery Health channel where Sharmyn McGraw's episode of Mystery Diagnosis was playing. I finally saw someone who had the same thing as me. I didn't know what it was, but when the episode was over, I researched Cushing's disease, printed out pages of information and took it to the appointment with the endocrinologist. Of course, when she first met me and saw me, she knew something was wrong, too. I suggested Cushing's disease and she thought I could be on to something: all I needed was an MRI to prove it. 

After that, the rest is kind of a blur! In August 2007, I got the MRI that showed a 6mm tumor in my pituitary. I had my first brain surgery at John's Hopkins on September 20, 2007. I ended up getting diabetes insipidus with my first surgery, but I felt it was worth it to take care of my health. 

I missed the first semester of senior year with my friends because of the surgery, but it was totally worth it to finally attack that tumor! A few months after, I started losing weight and feeling better, so I went back to school second semester and graduated from high school with honors in 2008. Unfortunately, I only dropped about 10 pounds, and my weight began to creep up on the scale. I was feeling miserable again. In my heart, I knew my Cushing's had come back. 

Through the pediatric endocrinologist, I was able to be put in a medical journal and also spent time at the NIH to be in a Cushing's protocol where regrowth of my tumor was found. By January 16, 2009, I was having my second brain surgery and got out of John's Hopkins again on inauguration day (go Obama!). But sadly, after the second surgery, I never lost a pound and none of my symptoms went away. I knew that it was time to do something different.

By 2010, I was fed up with being sick and started exploring my options. I was considering two treatment options:  radiation or bilateral adrenalectomy (BLA, removing both adrenal glands). When my cortisol levels in my UFCs were coming back greater than 1200 and 1300 with a reference range of 16-50, I knew I had to do something extreme to fix my extreme cyclical Cushing's.  So I opted to have BLA on April 23, 2010.  It was the best decision I ever made. From that June to December 2010, I lost 50 pounds. 


By 2011, From then to now (April 2011), I've lost an additional four pounds, bringing me to my lowest weight of 129 pounds. Besides the weight loss, my skin is perfectly clear, my hair has grown back, and my stretch marks continue to fade. I have enough energy to have a part time job while going to school. I don't need to take two hour naps each day. Of course, I take hydrocortisone and other drugs to regulate my hormones, but I do it happily knowing that the alternative is pure hell. 

Although I wouldn't with Cushing's on my worst enemy, going through this journey from 2006 to now has changed me and given me opportunities that I would have never dreamed of. I was even featured in my local paper!  It has also helped me realize that I want to go into the medical field and that I can do anything I set my mind to. Friends call me their hero, and that is an amazing feeling! 

So for all of that, I have to thank Dr. Lorelle Bradley (former primary care physician), Dr. Catherine Christie (first endocrinologist), Dr. Alfredo Quinones-Hinojosa and Dr. George Jallo (AMAZING neurosurgeons at John’s Hopkins), Dr. Ashish Behari (urologist), Dr. Michael Bryan (current endocrinologist), and all the nurses and staff at John's Hopkins, Kaiser Permanente and Washington Hospital Center for getting me where I am today... but I also thank God for speaking to me through Sharmyn McGraw and Mystery Diagnosis so that I would have my "aha!" moment and basically diagnose my own condition. 

February 2012: a birthday photo shoot. FUN.

~ * ~ * ~ * ~ *

1) How are you now- what can you do now but couldn't before
I'm great right now! Since my BLA, I have gone from 184 pounds with sore joints, painful feet and almost 0 muscle strength to 129 pounds and being able to shop in the misses section of stores again! I also have enough energy to have a part-time job while also being a full-time student. I don't take naps every day because of my increased energy, my hair is looking beautiful and my stretch marks are getting lighter and lighter each year. I also enjoy time with friends and am no longer ashamed to see people for fear that they won't recognize me or comment on how different I look. I plan on working for a while to make money for school and transfer to Virginia Tech next Fall, but for now I'm just a happy, and much healthier student and employee!

2) What you hope to do differently as deal with patients because you had Cushing's, etc. 

As of now, I want to get my undergraduate degree in nutrition (which I became very interested in while at John's Hopkins for my first brain surgery), and I may decide to take the test to become an R.D. afterwards. 

I also dream of going into Endocrinology after my Bachelors (and if I don't want to continue with nutrition). If I were a doctor, I know that I would NOT give up on my patients and also, find the best recourses for them if I couldn't figure out what was wrong with them. After all, that is what saved me. Of course, I would have an extra level of compassion for them, but most of all, I would encourage the ones that have been battling Cushing's for years NOT to give up. I come across a lot of Cushies today that want to throw in the towel and it makes me sad.  If I were their doctor, I wouldn't let them give up. 

My friend Chanelle. I'm glad Cushing's brought us together.

Day 19: Chanelle's Heart Filled with Art

Stories of the Heart: Chanelle

http://artwithheart.org/blog/stories-of-the-heart-chanelle/


Written by Katy Bourne

After becoming depressed, lethargic, and losing grasp of her zest for life, Chanelle Felder knew that something wasn’t right. Because she was a lifelong dancer, she thought she was tuned into her body, yet over the course of a few months, she was beginning to notice that she was unable to move in the graceful and carefree way that she usually did. Her every step was slower, heavier, and—unbeknownst to her—a step in the wrong direction in terms of her well-being. Along with her labored movements, she also began to experience overwhelming fatigue, numbness in her hands and feet, hair loss, terrible acne, and a plethora of depressing ailments…along with actual depression! Next came weight gain and also “brain fog,” an inability to concentrate or even speak coherent sentences. She started having difficulty in some of her favorite classes. This was when her family knew that something was definitely wrong. After a long diagnostic process, an MRI revealed that Chanelle had a tumor on her pituitary gland and she was diagnosed with Cushing’s disease. She was just 16 years old.

Cushing’s disease is a condition in which the pituitary gland produces too much cortisol, a vital hormone that helps the body respond to stress, helps the metabolism of food, and even determines when you wake up in the morning, among other things. Cushing’s disease is usually caused by a tumor on the pituitary gland, which is located at the base of the brain. There are multiple symptoms: fatigue, weight gain, bone pain, stunted growth,  hair loss, muscle weakness, acne, confusion, depression and fatty deposits on the face and between the shoulder blades. Because symptoms mirror those of numerous other conditions, it is often difficult to diagnose, and the first line of treatment involves a special type of brain surgery to remove the tumor and, in some cases, the removal of the adrenal glands is necessary if brain surgery isn’t enough.

With the onset of her illness, Chanelle experienced a range of emotions. She was confused as to why this was happening to her. She was also angry and scared. She was worried for her parents and also struggled with the overwhelming new experience of hospitals, surgeries, medical procedures, complicated diagnoses, and the barrage of needles, IV’s, MRI’s and tests that were necessary to stop the madness that was tearing apart her body and her life. Because she had always been athletic and fit, the changes in her body were particularly distressing. She gained a significant amount of weight and developed “moon face,” a rounding and reddening of the face, which is a common symptom of the disease. “It was very, very difficult,” she recalls “and not being recognized by people that I’ve known my whole life is probably the hardest part of all of this”.

During Chanelle’s first hospitalization, a child life specialist paid her a visit and gave her a copy of Chill & Spill.  Being fiercely creative by nature, Chanelle took to it immediately. She says, “My first impression? I loved it.”

She was drawn to the artwork and liked the interactive quality of the book. She loved the quotes inside the back cover. “A lot of the quotes were so true and just helped me get through some things.”

The writing prompts were also very useful to her, especially when the brain fog made it hard to collect her thoughts. Chill & Spill became more than a journal for Chanelle; by adding her “own things” to it, it became a scrapbook of sorts, or a creative log of her experiences. “I took it everywhere with me, every doctor’s appointment and everything.” She invited people that she met along the way-nurses, doctors, friends and other patients- to sign the book and to write words of encouragement. “The book started out with being an outlet for me to get my thoughts and feelings on paper, but it really became a tool for me to connect to other people.”

Chanelle says that Chill & Spill reinforced that it was OK to feel whatever she was feeling. It also served as a chronicle of her strength throughout a very difficult ordeal. “You can use Chill & Spill as a tool to go back and look through your personal journey, and just see how strong of a person you’ve become out of your experiences.

Chanelle believes that anyone could benefit from Chill & Spill. “It’s all-encompassing. It can help you cope with something that you are going through, whether it is something that is a devastating event as in health problems or a death in the family or just everyday life. Everybody goes through a bummer day when they just need a place to chill and spill.”

Chanelle credits Chill & Spill with helping her get through her illness: “I am just so blessed and so thankful for what Chill & Spill has done for me and for all the things that have come out of just having that notebook. Chill & Spill helped me go from this place where there was nowhere else to go…to a place where now I’m just so thankful for everything I’ve been given.”

NOTE: You may purchase the book Chill & Spill at the Art with Heart Shop.

Day 18: CHANELLE: A Cushing's Survivor Story

Day 18: CHANELLE'S Back on her Feet after Brain Tumor

Back on her feet after brain tumor

September 23, 2008 12:15 am

Chanelle Felder was glad to learn she had a brain tumor; her debilitating symptoms had her thinking she'd gone mad. Chanelle Felder changes from ballet shoes to her pointe shoes between dances. The woman is recovering from Cushing's disease. Alycia Shaffer (seated , left) watches over a ballet class at Amyclae Dance Studio where Chanelle Felder (foreground, right) is practicing. A brain tumor left Chanelle barely able to walk and speak. Chanelle Felder (second from right) chats with classmates in her modern dance class at Amyclae Dance Studio. Chanelle spends countless hours in dance classes. Chanelle Felder (center) participates in a dance class at Amyclae Dance Studio in Stafford with Hope Janowsky (left) and Erin Bradley.

By CATHY DYSON

Chanelle Felder doesn't hide her battle scars when she's dancing with slender girls built like ballerinas.

She's too busy enjoying herself--and being grateful for all her experiences, including weird side effects from a rare disease that caused weight gain and hair loss, numbness in her feet and stretch marks on her shoulders.

"A lot of this, I would not change one bit," said the bubbly 18-year-old, who talks a mile a minute as she tries to get across all the thoughts running through her mind.

"If I hadn't gone through this, would I have met the people I've met? The doctors who were so amazing, even the people who wheeled me into the operating room? Would I have made the connections I've made? No," she said. "Anybody can have a great high-school experience, but would I really appreciate the stuff I have everyday if I hadn't gone through something? Not that I recommend people go through a brain tumor."

Chanelle was a 16-year-old junior at Mountain View High School when doctors thought a thyroid condition caused her extreme mood swings.

But her problems went far beyond crying for no reason. Her hair fell out in clumps and acne dotted her face. Pockets of flesh formed in her stomach and on her back, a condition she says is known by the lovely name "buffalo hump."

She gained 40 pounds in a few months. When she performed at the school's "Idol" competition in March 2007, classmates whispered she looked like she was pregnant.

The girl who had been a model, dancer and cheerleader--active in programs since preschool--had high blood pressure and trouble walking.

She couldn't put sentences together, much less express herself through poetry or creative writing, as she'd always done.

"I literally wanted to drop out of high school, and that was completely not me," Chanelle said.

The daughter of Rufus and Cathy Felder eventually learned she had Cushing's disease, a rare condition caused by a buildup of cortisol, a stress hormone.

A tumor right between her eyes, on her pituitary gland, caused the problems.

As devastating as the prospect of brain surgery last September was, Chanelle was glad to know what was wreaking havoc on her body.

"People had been telling me I was crazy," she said. "When they said I had a tumor, I was crying because I was happy I finally had a diagnosis."

Chanelle is thrilled to be active again, and these days channels her energy into dance.

After she graduated in June, she followed doctors' orders to take off a year before college. She's trying to get back in shape by working out with her dad, a retired Marine. The two plan to run the Army 10-Miler next month in Washington.

One day, she and her mother noticed a new dance studio off Courthouse Road in Stafford County.

Chanelle had taken dance classes from ages 3 to 14. But the disease caused so much pain to her feet, she could barely climb steps at times.

"The thought of not being able to dance was so painful, I didn't even want to talk about it," she said.
But she couldn't stop thinking about it. She talked herself into attending two days of programs at the new Amyclae Dance Academy, then signed up for 13 of the 17 classes for teenagers.

"I can't tell you what a lifesaver this was," she said. "The classes have only been going for two weeks, but they've been the best two weeks in the last two years."

Chanelle still has problems. She struggles with balance and a number of the demanding positions in advanced ballet. Still, she smiles.

"She just glows," said teacher Corey Holmes. "She doesn't just do the steps like a lot of dancers do, she radiates."

Studio owner Tina Singer has taught for 15 years and has never seen anyone inspire others like Chanelle. "Her eyes light up with every step she takes," she said.

Recently Chanelle chatted with students, teachers, parents, younger siblings and anyone else in the room. She told a girl at the front desk how much she liked her haircut and a fellow student that she had the same kind of shoes.

When Singer--also known as "Miss Tina"--coughed in class, Chanelle asked if she still had bronchitis. An hour later, after Miss Tina put the ballet students through a rigorous workout, she asked the class members to look like they were enjoying themselves.

"They're normally a happy bunch, they really are," Miss Tina told a visitor.

Chanelle was the only one who responded. Her face was aglow, even as she grimaced through some of the steps.

"I'm always happy," she said, "even though it hurts."

Cathy Dyson: 540/374-5425 
Email: cdyson@freelancestar.com

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HER FUTURE Chanelle Felder, 18, plans to rebuild her strength this year, then attend community college for two years. After that, she'd like to follow in the footsteps of her father and be a social worker. Rufus Felder spent 20 years in the Marine Corps, then earned a degree from Virginia Commonwealth University. He works in Washington with substance abusers. Chanelle sees social work as another way of expressing herself and helping others. "Poetry is emotion, dance is emotion, social work is emotion," she said.

HER ADVICE Chanelle Felder struggled with various symptoms for eight months before she was diagnosed with Cushing's disease, a rare condition that affects 10 to 15 of every million people. Only 10 percent of its victims are children or adolescents; the rest are ages 20 to 50. Chanelle kept track of her "weird symptoms," which varied from physical problems, such as numbness in her hands and feet and weight gain, to emotional issues, such as crying uncontrollably and feeling panicked. She suggests that others with medical problems do the same. "I thank God every day for doctors, but they're not gods, they're humans," she said. "You know your body better than anyone else. Listen to your intuitions about what's wrong with you."

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Copyright 2012 The Free Lance-Star Publishing Company.