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FARAFARA Cure FA

Patient Perspective: Abby & Chase's Experience in a Research Study

I recently had the opportunity to participate in a cardiac study at CHOP. The study consisted of blood draws, an MRI, and an appointment with Dr. Lin who is an attending cardiologist that works in the Friedreich’s Ataxia Program.

 YinglingFamilyMy youngest brother (who is 12) has FA and he participated as well. Thus, my mom, dad, brother, and I hopped in the car and made the hour-and-a-half drive from Harrisburg to CHOP. We left at about 6 AM and made our way into the hospital at 8. We met with Felice Wilson and were directed to first get blood drawn. Since it was so early I hadn’t had much to eat so my veins were not cooperating with the phlebotomist. Eventually, after being a human pin cushion, she finally collected the necessary amount of blood. 

After that, to make efficient time, I went to have the cardiac MRI and my brother was sent to get an EKG as part of the appointment with Dr. Lin. I am always nervous about MRIs since I am a bit claustrophobic, but I was tired so I was able to take a nap. You are also allowed to listen to music in the machine so the technicians were nice and put the radio on. Lastly, my brother and I switched roles and I went to have an EKG while he went to the MRI. I have had many EKGs and this one was no different. Easy as pie!

The most important part of the day was my appointment with Dr. Lin. As any patient with FA, hearing news about your heart is the most nerve-wracking thing since there is always a risk of hypertrophic cardiomyopathy. Luckily, my results from the MRI and EKG came back within normal limits. At 20 years old (almost 21!) my heart still looks great! A few irregular beats and a little thickness, but nothing clinically significant which is always good news. My brother received similar results.

All in all, we had a very busy day at CHOP. My brother and I received good news about our heart health, but we also contributed to research to help cure FA! That is the best feeling of all and I highly encourage everyone who is able to participate.

Click HERE to learn more about the Cardiac MRI & Biomarker study and how you can be involved. 

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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.

 

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