Peer-to-peer, global support for those affected by fibromuscular dysplasia.
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Friday, May 17, 2013

FMD Chat is celebrating National Orange Popsicle Week — you can too!

Join us for a week of raising awareness of stroke in young people. 

Saturday, May 18
Like FMD Chat and NOPW on Facebook!

Sunday, May 19
Learn more about stroke from staff at University of Tennessee Medical Center's Comprehensive Stroke Center and join in recognizing National Orange Popsicle Week from noon to 7 p.m. May 19 at Pop Culture, a gourmet popsicle shop in Knoxville, Tenn. There will be free blood pressure screenings, and a portion of popsicle proceeds will go toward purchasing iPads to use in the Stroke Center's aphasia treatment programs.

Can't be there in person? Buy your orange popsicles virtually! All donations collected through FMD Chat during NOPW (May 18-25) will go toward the goal!

Monday, May 20
Share a stroke fact with someone you know. Fibromuscular dysplasia can be a cause of stroke.

Tuesday, May 21
Find out more about your own stroke risk with a self-assessment.

Wednesday, May 22
Read about the founder of NOPW who suffered a stroke at age 24.

Thursday, May 23
Share your orange popsicle photos on Facebook and Twitter! Be sure to mention National Orange Popsicle Week and FMD Chat when you tag your photos on Facebook, or tag @NOPW_ and @FMDChat on Twitter.

Friday, May 24
Read FMD patients' stories about their diagnosis.

Saturday, May 25
Share an orange popsicle with friends or family members and do something to reduce your stroke risk factors!



And don't forget!

FMD Chat Together 2013
Sept. 13-14
Asheville, N.C.


Sunday, May 12, 2013

National Orange Popsicle Week Comes to Knoxville to Raise Stroke Awareness

Learn more about stroke from staff at University of Tennessee Medical Center and join in recognizing National Orange Popsicle Week from noon to 7 p.m. May 19 at Pop Culture, Knoxville’s gourmet popsicle shop. 

“I love the simple and straightforward idea of taking something I love doing and being a part of—making popsicles—and using it as a basis for education,” said Jason Mitchell, Pop Culture’s owner. “It’s so much easier to learn and be receptive to awareness when you hare having fun.”

National Orange Popsicle Week (NOPW) began as a way for a young woman who suffered a major brain stem stroke at age 24 to raise awareness of stroke in young people. One in five strokes occurs in adults age 22 to 55. Stroke is the fourth leading cause of death in America and a leading cause of adult disability, according to the National Stroke Association.

UT Medical Center, which the American Heart Association has recognized for improving stroke care by promoting consistent adherence to the latest scientific treatment guidelines, will be providing free blood pressure screenings and stroke education during the popsicle-based awareness event.
A stroke occurs when there is an interruption in blood flow from the heart to the brain, causing brain cells to die. The May 19 popsicle event at Pop Culture will raise funds to purchase iPads for the UT Stroke Center’s use in aphasia treatment. Aphasia is a disorder caused by damage to the parts of the brain that control language. Aphasia can result in difficulties reading, writing and speaking.

“Stroke is a devastating disease: it happens like a tornado and the lives of the survivor and their families are never the same,” said Jennifer Henry, BSN, RN, CNRN, director of the UT Stroke Center. “Many people mistakenly believe that stroke only happens when people are older, when in fact, stroke can happen at any age. It's critically important that people take a look at their own risk factors and take steps to reduce risk. Everyone, even children, can learn to recognize the warning signs of stroke and the importance of calling 911 when stroke symptoms happen. NOPW shares this message in a unique way.”

Amy Wooddell’s first symptoms were dizziness and nausea, which didn’t neatly fit the acronym FAST, which is used to recognize and act on stroke symptoms—Face: does one side of the person’s face droop? Arms: if the person raises both arms, does one arm drift downward? Speech: does the person’s speech seem slurred or strange? Time: if any of these symptoms are observed, call 9-1-1 immediately.

Wooddell went to the emergency room only to be given medication for vertigo and sent home. The next morning she felt worse. The cause was a dissected vertebral artery, one of the major arteries leading to the brain. Doctors were unable to treat the dissection, and Wooddell later that night suffered a brain hemorrhage and lapsed into a coma. When she woke up days later, she was paralyzed and unable to speak.

Wooddell’s recovery was arduous, including 30 days in the intensive care unit. As she became more vocal, she finally was able to tell her new husband that she loved him—and that she wanted an orange popsicle.

However, Wooddell wasn’t allowed solid foods—even a popsicle—until she passed a swallowing capability test while in an inpatient rehab unit. The day she did was a victory, and her rehab caseworker bought an entire box of orange popsicles for Wooddell and her family. The orange popsicle was a much craved delight after nothing but water and liquid nutrition and became a symbol of recovery.

Fellow young stroke survivor, Sarah E. Kucharski learned about National Orange Popsicle Week through social media. The mission and the method resonated with her. Like Wooddell, Kucharski had a stroke at age 27 that was first diagnosed as vertigo, despite having a complicated vascular history. She spent a week in the hospital with extreme dizziness, double vision, and the inability to walk unaided. Nonetheless she was told that her symptoms would go away as quickly as they had developed and sent home with a walker.

It wasn’t until the first night out of the hospital that Kucharski’s discovered that she had no temperature or pain sensation on the right side of her body. She consulted with her primary care doctor who referred her to a neurologist who immediately said that, given her symptoms and Horner’s syndrome causing her left eye to droop, her case was “a text book” stroke scenario.

Kucharski’s recovery was self-driven, and it took another four years for her to finally receive the diagnosis of fibromuscular dysplasia (FMD), a rare vascular disease that can cause narrowing of the arteries, arterial dissection, aneurysm, and stroke. Kucharski has a rare version of the rare disease, which has no cure, and no real treatment other than management of symptoms and surgical repair of the effected arteries. She has used her own experiences as motivation to found an international nonprofit organization dedicated to those affected by fibromuscular dysplasia—FMD Chat.

While Kucharski and Wooddell share similar stroke stories—and a love of popsicles—they don’t share geography. Wooddell lives in Kansas, and Kucharski lives in Western North Carolina. NOPW may be rooted in Kansas, but strokes strike all around the world, so once Kucharski learned of NOPW, she wanted to get involved.

As managing editor of magazine dedicated to the Southern Appalachian region, Smoky Mountain Living, Kucharski got to know Knoxville through her work travels. She had read about Pop Culture and visited the mobile popsicle vendor’s bricks-and-mortar shop on Walnut Street last year. With the goal of bringing NOPW to the region, she reached out to Pop Culture’s owner.

“You should check out this event. If there’s anyone who could make it happen in Knoxville, it’s you,” she wrote to Mitchell on the Pop Culture Facebook page.

Mitchell’s response was enthusiastic. He immediately offered up the Pop Culture shop where he makes and sells his famous popsicles using ingredients from local vendors, milk without rBGH growth hormones, and sweeteners such as organic cane sugar, honey, or agave. He’s even put extra effort into making the color orange.

“It took me months to find something natural, and a company out of Louisville, Ky. formulated some orange coloring out of Beta-Carotene for me to use, and it's odorless and tasteless,” Mitchell said.

For NOPW, Mitchell will be serving up his Orange Cream and Mango popsicles, but he isn’t afraid to get creative.

“I may make something else that is orange, but I have to play around a bit with the ingredients and their respective colors to see if something else ‘Orange’ is possible,” Mitchell said. “The bright red of Strawberry Lemonade or the robust purple of Blueberry Vanilla would be immune to adding natural orange color.”

Pop Culture is located at 706 Walnut Street next to the Knox County Public Library, Connect via Facebook at facebook.com/popcultureknox. To learn more about National Orange Popsicle Week, visit nopw.org or facebook.com/nationalorangepopsicleweek.

Sunday, February 17, 2013

Rare Disease Day - Rare Disorders Without Borders - Fibromuscular Dysplasia Around The World

In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are sharing their stories about how FMD has impacted their lives.

Medical professionals are taught that when you hear hoof beats, think horses—not zebras. That is fine when you are a horse, but sometimes a hoof beat does belong to a zebra. I am a medical zebra twice over. In July 2004, I was diagnosed with Fibromuscular Dyplasia or, for short, FMD.

When I first looked up information on the internet on FMD; I found foot and mouth disease or things that stated that I did not have long to live. I felt very much alone.

There were moments of frustration because in a lot of cases I was the one who knew more about my disease then the medical professionals treating me. An example of this was being in the ER with a blood pressure of 230/120 with a severe headache. At the time, the last thing I wanted to do was to have to explain what was wrong with me.

There are times that I would want to hide and but I found that while my life has changed being a “zebra” has only made me stronger. For it is a matter of accepting change and realizing that it is ok for me to have moments to grief. While I have had to stop doing some things I love, I have been able to start new things.

In July of 2011, I was diagnosed with Pulmonary Arterial Hypertension thus making me a medical zebra one again.


Share your own story about how fibromuscular dysplasia has had an impact in your life. Whether you're a patient, a family member, a caregiver, or a healthcare provider, we want to hear from you!

Sunday, February 10, 2013

Rare Disease Day - Rare Disorders Without Borders - Fibromuscular Dysplasia Around The World

In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are sharing their stories about how FMD has impacted their lives.

"I am Deb B. I live in the foothills of Adelaide, South Australia. I have Fibromuscular Dysplasia. Up until my diagnosis and first treatment in 2007, I was really sick, unable to function basically. My once organised life was in shambles. The symptoms were many, and I was often hospitialized for my extremely high blood pressure. Medication wasn't working, my vision was poor, my headaches on going; I could barely walk at times and was dropping weight dramatically. I knew something was very wrong and so did every doctor who looked at me.

Adelaide, South Australia
Strangely all tests showed no cause for concerns. 2007 definitely was the year I became grateful for technology. Redoing scans I had had previously on more advanced equipment revealed the state of my vascular bed. It was a train wreck. The disease was taking its toll. I had kidney shrinkage with a blockage to my right renal artery at almost 100 percent. My left renal artery was at 58 percent. Arteries to other organs were compromised, including an aneurysm to the brain with other inter cranial artery weaknesses. 

I have had several procedures to help blood flow and three stents for the aneurysm and surrounding weakened arteries. Thankfully my headaches disappeared, my vision improved, and my blood pressure dropped, but I'm not out of the woods. I have good days and bad days—thankfully more good than bad. It has been challenging allowing medical professionals to take care of me knowing that FMD was not familiar or even heard of among them. I do have fantastic doctors with a good understanding now, but it took many years to find them. 

No awareness was the problem with FMD diagnosis, and only by a chance chain of events did I get one. My hope is that for future patients a diagnosis will be quick—before damage or death occur. I have several special strings of beads."


Share your own story about how fibromuscular dysplasia has had an impact in your life. Whether you're a patient, a family member, a caregiver, or a healthcare provider, we want to hear from you!


Thursday, January 3, 2013

FMD Chat Prepares for Rare Disease Day, Feb. 28

In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are asked to email pictures of themselves and a brief story about how FMD has impacted their lives to FMD Chat. 

Pictures and stories will be shared on FMD Chat's website and Facebook page in the weeks leading up to Rare Disease Day, and FMD Chat will showcase the disease's impact across the globe. 

To participate, email FMD Chat at fmdchat@gmail.com with a picture of yourself and a story about how FMD has played a role in your life—as a patient diagnosed with the disease, as the family member or friend of a patient, or as a caregiver to FMD patients. Be sure to include your first name and the initial of your last name, as well as information about where you live (town and country). 

The deadline to submit photos and stories is Feb. 20, 2013. Be sure to tell other patients and healthcare providers about the opportunity to spread awareness of FMD and Rare Disease Day!

 
Need resources to learn about Rare Disease Day and help spread the word? Check out the following links. EURORDIS and National Alliances for rare diseases are inviting all patient organisations, caregivers, researchers, public authorities and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the inequalities that rare disease patients face every day.