Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Patient Perspective: Mandy's Experience Participating in a Research Study

MandyDavisPatientExperience1Last summer, I was approved eligible to participate in a study at Weill Cornell Medical College in New York, NY. The purpose of this study is to determine the best method to measure for cardiomyopathy by comparing and evaluating different tests.

This study seemed to be right up my alley; helping the FA community and researchers in a non-invasive way, and they were all tests that would help put my mind at ease. For me (and many, I'm sure), seeking a second opinion is nothing new, and that's how I looked at this. I get an echocardiogram annually, but my mind always wondered, “what if they've missed something?” This would be a great way to have my heart examined, in many different ways, to either shed light onto something the echocardiograms have missed, or allow me to not have that in the back of my mind.

 

On July 29, my mom and I traveled to NYC for a quick trip—we stayed Wednesday-Saturday morning. We arrived Wednesday, around noon, and got checked-in to the hotel and went to Central Park for a little while. Afterwards, we headed back to the hotel to rest before beginning the study the following morning. The next two days were full of tests beginning around 8:30 a.m. and finishing around 3 p.m.

Study included:
 Blood and urine tests
 Cardiac magnetic resonance imaging (CMR)
 Chest x-ray
 Echocardiogram (ECHO)
 Electrocardiogram (ECG)
 Exercise-stress test (via hand cycle)
 Eye Exam
 Neurological assessment
 Physical and medical history

MandyDavisPatientExperience2One thing they stressed to me, if you're uncomfortable completing any of the tests, you can opt out.

Although every echocardiogram I have done in the past showed no abnormalities, it was refreshing to have it confirmed by having all of these tests run. The bonus? This study was so much fun! I'm sure the list of tests above would suggest otherwise, but it was interesting and the study's staff was amazing (nice, accommodating and funny). It was a great opportunity to help further research, have an extensive work-up of my heart done and a chance to check out The Big Apple. Each day, I was dismissed by 4 p.m., so that allowed me time to mark a few things off my bucket-list (which, seems to be growing!).

Honestly, I wish I could do it again! If you meet the requirements, it's definitely worth your time!

Click HERE to learn how you can have the opportunity to be apart of this study of cardiomyopathy in Friedreich's ataxia at Weill Cornell Medical College.

MandyDavisMandyDavissignature

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
Event G.jpg

 

Archived in
  the Ambassador Blog