My life with chronic illness On a journey to a diagnosis

amanda_phillips_hEDS-angina

Amanda Phillips's Story

Leesburg Florida

Age: 16-24

A little bit about my journey:

My Diagnosis

Prinzmetal Variant Angina, Hyper mobile Ehlers Danlos Syndrome, Asthma

Time to Get Diagnosed

10 years

Year I was Diagnosed

2018

Sending Love to

Shveta Gupta MD, Hematologist

Hospital I'd Recommend

Arnold Palmer Hospital For Children

This is my story:

Hi my name is Amanda Phillips and it took 10 years to get diagnosed. I had started experiencing symptoms when I was about 6 it started off with really bad pain in my legs, my hips and my lower back, but my parents just passed it off as growing pains then I started having stomach issues I Had a hard time keeping food down and was always bloated, I had a terrible time finding things I could eat and we did find that I’m lactose intolerant and it helps a little but unfortunately it didn’t cure my G.I. issues and so i’m still undiagnosed and don’t know what’s causing them, I have also suffered with very sensitive skin with really bad eczema since I was little. Then when I was 8 I started having issues with my breathing and my doctor diagnosed me with asthma. Then when I was 11 I herniated two discs in my lower back which for my age most people told me I was too young to have and that’s when we started looking into other options for diagnosing what I could possibly have. Then when I was 14 I found out I have a severe food allergy to shellfish so now I carry an epi-pen. Then in 2018 when I turned 16 I ended up at Arnold Palmer Children’s Hospital and I spent a week in the cardiac ICU due to severe chest pain and I found out that I have a condition called Prinzmetal variant angina which is a spasm of the coronary artery and due to that I was told to see a cardiologist I have spent the past three years taking tests for my heart and unfortunately we still don’t know what caused that because the condition I have is normally seen in patients that are in their late 40s or older so we still do not know what caused it I get yearly echocardiogram’s and we do a stress test yearly I’ve had nuclear testing, MRIs and CT’s but we still don’t know what happened. He then referred me to a hematologist so we could make sure I that my blood didn’t have any clotting issues that could affect my heart because I mentioned I have always had really bad periods. I have gone through so many blood tests to try to find out why it happened then my hematologist had decided to looked into my family history and my personal medical history to see if there was anything useful and she was actually the one who had mentioned Ehlers-Danlos syndrome because of all of my medical history and just in general personal history and she’s probably been one of my favorite doctors ever since she’s diagnosed me because she’s just so understanding and willing to learn and listen to what I am having issues with and I am so grateful that she was able to diagnose me because it gives me an answer to issues I’ve had since I was little I don’t know where I would be today if I hadn’t met her or gotten that diagnosis. I’m still hoping that in the future we will be able to know what caused my cardiac issue Because unfortunately it is not an issue that is usually involved with Ehlers danlos syndrome and maybe some point soon I’ll be able to get an answer to my Gi issues so I’m still on a journey to a diagnosis.

Let’s play 20 questions:

The song that keeps me going is:
Unstoppable by the score
I never leave home without my:
Headphones
My go-to feel better movie is: 
Ferris Bueller’s Day Off
If I was in the hospital, the celebrity I would most love to visit me would be:
Haley Lu Richardson
When I need to relax, I:
Read a book
My favorite food is:
Steamed broccoli
The quote that keeps me going is:
Perfect is overrated it is our flaws that make us human —from Harley in the Sky by Akemi Dawn Bowman
When I need a laugh, I:
Play with my pets
Meet my pets (or favorite stuffed animal):
Sophie is a 10 year old labradoodle and Bella is a 6 year old calico Cat.
My hero is:
My mom
When I’m having a down day I binge watch:
Supernatural
My favorite book to get lost in is:
A constellation of roses by Miranda Asebedo
I want to be best friends with:
Izzy Kornblau from YouTube
The thing I’m most proud of:
That despite my health issues I didn’t let it stop me from graduating from high school
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I have met some amazing doctors and friends that have supported me no matter the issues I was going through.
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
Sits with me and just listens to me talk with no judgement.
My favorite social media account to follow is:
Ehlers.danlos on Instagram they have so many great things like Virtual support groups and tips from other warriors.
The advice I would give to myself back at the beginning of this journey would be:
Keep moving forward no matter how hard it gets because once you get the diagnosis it makes it all worth it.
Words of encouragement that I’d give to my fellow warriors are
Keep fighting and moving forward you are stronger than you think.
Follow my journey: IG: amanda.grace.phillips

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