Our August 2009 Stroke Hero is yet another demonstration of how strokes effect children from pre-natal to teens and young adults. Emily Block displays tenacity in pursuing her life and refusing to be limited by her stroke event.
Emily always considered herself a pretty healthy kid growing up. Other than a few orthopedic problems and almost daily migraines, nothing seemed to slow her down. Looking back, Emily now knows that many of the signs of what was to come were looked over by her self and her doctors. As an infant Emily had blue lips, which was an indication of Patent Foramen Ovale, a type of hole in her heart. She had odd episodes that didn't seem to fit under the migraine diagnosis she was given. Still, life went on as “usual”. Emily played competitive soccer year round and graduated from high school with an above 4.0 GPA. Her first year in college was amazing. Emily loved staying busy with a rigorous pre-med class schedule, campus clubs, and going on adventures with her friends. In early August 2007 she was enthusiastically telling her dad about plans to start an international club when all of the sudden, things didn't look right. Emily recognized the Picasso painting-like distortion of her vision as an aura to a migraine, so she took her migraine medication and hunkered down in her room for one of the worst headaches has ever experienced.
The following day Emily woke to find her headache gone, but still wasn't seeing things correctly. She tried to go to work, but found driving difficult. Emily noticed she couldn't read and that sometimes had difficulty with speaking. After several days, she could not see correctly; this was the moment when her life really changed. Instead of enjoying the last few weeks of summer, Emily went from doctor to doctor trying to figure out what was wrong. Her pediatric neurologist was sure Emily had experienced a stroke, but was puzzled that nothing showed on the MRI.
Despite her vision distortion and her fear that she had not yet been diagnosed, Emily went back to school in September and managed to get along fairly well despite her extreme difficulty with reading. One Friday, Emily remembers being on the phone with her mom and telling her that even with the vision issues, she was having the time of her life in school. Emily’s international club was a success; she became an officer for the Honors Board, was involved in a human rights group, had a new job working for a travel company and loved her science classes. The week before Emily had scored a hat trick for the first time in a soccer game.
The following Saturday (October 6th 2007) Emily was watching TV with her roommate, when after an intense bout of hiccups she became very cold, nauseous, and felt dizzy and light headed. Emily decided to go to bed and sleep off what she thought was a bad reaction to new medication. The next morning, however, she was worse. Emily walked down the hall and couldn't get more than a few steps without falling into the wall. She felt like she was on a boat in a violent storm and noticed she was limping because her left side felt funny. Emily said all these signs and symptoms should have frightened her but she only remembers laughing with her roommate about how uncoordinated she was and how lightheaded she felt. Hours later and only feeling worse Emily finally went to the hospital. Living in a college town, the doctors there took one look at Emily and labeled her as having a killer hangover. As someone who does not drink, this was frustrating, but she was too sick at that point to argue. Emily was sent home from the ER and told to drink lots of fluids.
Over the next few weeks Emily found out she had a hole in her heart called a Patent Foramen Ovale, or PFO that was responsible for what she now knew were strokes. Emily withdrew from school for the remainder of the quarter and went home to seek treatment. It took several weeks for Emily to find a doctor who was willing to do the procedure to close the PFO because the procedure is considered highly controversial in the U.S. medical community. During this time, Emily experienced another stroke like event that sent her to the hospital in an ambulance. Luckily for Emily, the event turned out to be a Transient Ischemic Attack or TIA and not a full blown stroke. Finally, on Halloween, 2007 Emily had the procedure to close the hole in her heart. She was a little apprehensive of having heart surgery, but it was a minimally invasive procedure that was actually easier than having her wisdom teeth removed! Emily was even awake (but groggy) for part of the surgery which she thought was very cool. Since the PFO closure, Emily has experienced no new strokes, TIAs, or even migraines!
Emily’s struggles are far from over though. It took many weeks of vestibular therapy for Emily to regain most of her balance back. Not able to find a program to help rehab her eyes, Emily tried to do it herself by playing games on her brother's gameboy and staring at text, trying to read. In November, almost four months since her visual stroke, Emily read her first book. Now she has completely retrained herself to read despite the distortion of her vision and reads one or two books a week. She still has left sided weakness and slight ataxia, but it has improved to the point she only limps when very tired, thanks to physical therapy. Emily has a host of other random stroke remnants such as not being able to taste on the left side of her tongue, vocal cords that get tired quickly, and she still mixes up words sometimes. But none of these things really bother Emily. Her main problem right now is a condition called dysautonomia (more specifically postural orthostatic tachycardia syndrome - POTS). Emily has a genetic predisposition for this condition, but it did not bother her until the strokes and heart surgery put enough stress on her body that the condition was exacerbated. The dysautonomia causes extremely low blood pressure, elevated heart rate, exercise intolerance, digestive problems, as well as numerous other side effects.
Despite all this, Emily continues to keep going with her life and plans for her future. Just one quarter after her stroke in October Emily went back to school. Emily’s parents and doctors felt she should wait, but she was determined. Emily says things are much more difficult now, but every struggle is completely worth it. She experiences difficulties getting around. Because of her limited energy, she has to choose between going to class or doing something fun (although Emily says going to class always comes first.) Emily’s college experience is not what most would consider “typical”, but she still loves being at school! She has managed to continue to be a full time student and is still active in the Honors Program. Emily has found new things she enjoys through her illness such as volunteering for the American Heart Association and the Dysautonomia Youth Network of America. Emily says she has met so many amazing people through these organizations who have become her close friends. She has found immense support from her family and friends who don't even blink an eye at pushing her in a wheelchair through the mall or leaving in the middle of a movie if she needs to a rest. Emily has retained her quirky sense of humor; she continues to laugh often which she finds is the best therapy. She looks forward to going to graduate school to be a physician assistant and then specialize in pediatric cardiology. Emily also has high hopes that her health improves enough to permit her to travel the world.
Emily hopes that in the future, others with similar experiences will be able to get the care they need before they have strokes, and that if young people do have strokes, they don't feel so alone.
Emily embodies those qualities that serve as an example to others; refusing to be placed on the sidelines of life she pursues her dreams through tenacity and determination. She not only overcomes obstacles placed in her way, but serves as a role model to others as well as an advocate for fellow Stroke SURVIVORS.
For these and many more reasons, Emily Block is our August 2009 Stroke Hero
To learn more about Emily's story, visit the Mustang Daily Newspaper - California Polytechnic State University's campus newspaper by clicking on the above image.
