Patients Discuss Their Loss of Identity | Beyond Diagnosis | Chasing The Cure

[@nancyhafler694]

Strong video made me cry because I’m in there boat I’m finally realizing that I’ve been fighting this battle alone I wish I know more people so I could talk to them

[@chasingthecure]

Hi Nancy. We want you to know that you're never alone. Please visit our website and share your story: www.chasingthecurelive.com/?source=youtube&campaign=ctc-yt

[@kaistockman6443]

Exactly what Theresa said I was thinking. Shannon should absolutely continue public speaking if she wants, she would be great and really inspiring. And a mom IS a job. I’m not a mom but It’s just as important and I wish all the moms out there could be compensated for their work. 😀

[@fearxscape]

PREACH! AMEN!

[@kaistockman6443]

And stay at home dads. 😀

[@chasingthecure]

We ❤️ this. Thanks, Kai!

[@slowlivingjane]

I feel like someone reached inside of my chest and squeezed my heart while watching this. Chronic illness is indescribable..at least I used to think so until I started to document my journey. You find the words, somehow. Thanks ladies you explain it well.

[@chasingthecure]

Thanks for sharing. We are here for you on your journey.

[@hipdip1505]

Sabrina should look into connective tissue disorders such as Ehlers-Danlos syndrome. Gastroparesis should also be looked into. Ehlers-Danlos comes with POTS, MCAS and gastroparesis. There are a lot of us who go undiagnosed because doctors aren’t being taught enough to recognize it and they aren’t getting updated information about this. The Ehlers-Danlos society is spreading awareness and most importantly we have access to all of the up to date information, thanks to the amazing medical community who dedicate themselves to help patients all over the world with this under-diagnosed genetic disorder.

[@DangerousEdge]

My whole life - people I spent time with, activities I enjoyed doing, purposes that defined me - all gone within 5 years and 3 diagnoses. A lack of understanding & support (even among medical professionals who are ignorant or ill-informed) have really knocked me for a loop. Still grieving, trying to find relevance, and frustrated by limitations.

[@chasingthecure]

Sending you lots of ❤️

[@fearxscape]

The MOST POWERFUL VIDEO I HAVE YET TO SEE IS RIGHT HERE! @10:03 ON... WoW! WHAT STRONG words of ENCOURAGEMENT and TRUTH! Thank you! And.. Sabrina- A stay at home Mom IS WORK! I KNOW BC IVE DONE IT! AND it's the MOST REWARDING job one could EVER have! EMBRACE IT! Use your voices as long as you can. And Shannon- My only question for you is Please ck into getting a voice like CTC is seeking for Rori to have from Epidsode 1. There HAS to be a way! EACH OF YOU STILL HAVE work to do! Your not even close to being DONE! Prayers- Love- & Hugs from someone who can relate! Sabrina- life is not over for you- Dream BIG! Make PLANS! LIVE YOUR LIFE to the fullest as best as you/each of you can. I get it- to each of you- I DO GET IT! You are NOT alone. Each of you are SO INSPIRING AND ENCOURAGING. I VALUE your character BEFORE and AFTER! AND DEFINITELY as you each move forward with each passing day. Be Blessed- Be healed in Jesus ALMIGHTY name...

[@wagal50]

Sabrina my heart goes out to you three ladies. Made me cry. I have had fibromyalgia for over twenty years. And Sabrina I think I have the same rash as you. What is your Diagnosis for that? I have been to several dermatologist in Washington state and Arizona and they just did a biopsy here in Washington and said it is Granuloma Annular.

[@fearxscape]

🙏🙏🙏

[@wagal50]

What is your diagnosis for the rash?

[@chasingthecure]

Thank you for sharing. Sending positive vibes your way. 🙏

[@daniellamartzi1709]

Oh wow

[@Sakana_Ren]

I often wonder, "what's next?" After diagnosis, after successful treatment, is there a way to get back to work? Back to the old job before the diagnosis? before the illness? Or, does going through all of this lead people to a new job? a new career? What's next?

[@taylorcwimberly]

4:32 my I have been experiencing the EXACT thing happening to me for around a year, now. I struggle with what to call it.."flushing." It's not a rash, the skin is not raised at all. For me, it doesn't itch, or hurt, but it comes on very suddenly and my face feels hot shortly before it happens, and I feel out of breath for a few seconds. It only really happens on my face/neck/chest/upper back/and arms. Sometimes my hands feel like pins and needles, or hotter, other times not. It never happens in the exact same places on my skin and had very sporadic placement..., but it was ALWAYS symmetrical which I thought was very strange.. for example, it would be on my upper arms/chest/back/skip my elbows....and seems to usually avoid my tattoos on my arms, as well. Which made me really nervous that it could be an infection or something in my blood. Does anyone know where we can follow their cases?

[@chasingthecure]

Hi Taylor, we are so sorry to hear about your condition. Please visit our website to follow patient cases: www.chasingthecurelive.com/?source=youtube&campaign=ctc-yt

[@kilo-mn5md]

that young mom of 3 with mast cell looks to have all symtptoms of a gene mutation that is called pheo and paraganglomia tumors