BridgeBio’s Post

Name: BridgeBio on LinkedIn: #onrarepodcast
Uploaded: 2024-11-26T12:30:11.804Z
Duration: 3 min 6 s
Channel: BridgeBio
Description: Sean, who lives with ATTR-CM, recently joined our #OnRarePodcast and spoke about the many symptoms he experienced before receiving a diagnosis. He noted that finding out about his condition was a tremendous sense of relief, but a big change for him that he chose to look at positively. Learn more about Sean’s story: https://bit.ly/3VQUPEo

BridgeBio

46,010 followers

Sean, who lives with ATTR-CM, recently joined our #OnRarePodcast and spoke about the many symptoms he experienced before receiving a diagnosis. He noted that finding out about his condition was a tremendous sense of relief, but a big change for him that he chose to look at positively. Learn more about Sean’s story: https://bit.ly/3VQUPEo

Transcript

I've got a disease called hereditary amyloidosis. I was diagnosed in early March of 2019 after a period of about six or seven years. Symptoms were starting to build in, but not none of the doctors could tie it all together. The first symptom that I got, I was experiencing carpal tunnel in both of my hands. So I had carpal tunnel surgery on both my hands at a local hospital in New Hampshire and I didn't really think anything. Of it. My job entailed a lot of handwriting and and and typing and whatnot, so I just figured it was the normal way. You get carpal tunnel. Little did I know and little did them. The hand surgeon didn't know, but that was actually the first symptom of the disease and it's very typical. A lot of patients we see that with the first symptom was carpal tunnel. Had they taken a biopsy, they probably would have found amyloid in the tissues of my wrist. Shortly thereafter, I started experiencing numbness in my left foot and in my ankle. Fast forward about another two years. I had this uneasiness my chest and dizziness. I was taken to the hospital did all the tests for for cardiac event. It all came back negative. This time they did an angiogram where my heart and went in there and he got the results and he sat down and showed me the results and he said to me, because Sean, not only is your heart healthy, if you look at this, these images, it looks rather robust. He goes, I think you athletes, Hart, I probably started noticing. Three to four years prior to diagnosis that that my legs seem to be getting weak. I can walk around fairly well. I have walking sticks that I bought and if I hold The Walking sticks, I can walk almost fine. And the neurologist explained to me that that's because the neuropathy, my feet, the nerves sensations aren't going up to to my brain. So the whole balance thing is off. And then in my hands I often get, and this is the one that really hurts. That seems to happen only to my left hand. It'll cramp up, the fingers will curl up and and that hurts really bad. And it probably happens to me. I would say definitely daily. Finally getting a diagnosis with just a tremendous sense of relief, you know, so now I knew that we could go forward and do something. Ended up getting 74 infusion. So back to the emotional part of this, even after the diagnosis, I struggled with it a little bit, you know, emotionally. I'm not a little bit a lot, but I finally came to the realization that, you know, I can go down to paths with this. I can look at it negatively or I can look at it positively. So I chose to look at it positively. And if if I had not returned back here to get treated, I would not have met my at that time girlfriend and now my wife, Robin.

To view or add a comment, sign in

More Relevant Posts

Officially Lisa Connell

112 followers
2mo
Report this post
What Helps You Feel Like Yourself Again? When facing a diagnosis, it’s easy to feel like you’ve lost part of yourself. What helps you reconnect with who you are outside of your illness? #FindingMyself #MomentsOfJoy #BrainTumourAwareness #HopeThroughHardship
1 Comment
Like Comment
To view or add a comment, sign in
Silver Linings Foundation

491 followers
6mo
Report this post
The conversation about "recovery" usually starts after diagnosis. Families sometimes see it as a problem to fix, while those diagnosed are often surprised and unsure how to proceed. This blog covers common treatment terms and questions. https://lnkd.in/g4u_M6Hu
Like Comment
To view or add a comment, sign in
World Heart Federation

13,305 followers
6mo
Report this post
Unlock the truths and debunk the myths surrounding #arrhythmias with our latest infographic! 💡 Get informed about your heart's rhythm: early diagnosis and appropriate treatment can help prevent severe impacts of arrhythmia. USE ❤️ TO FEEL YOUR RHYTHM. Learn more: https://lnkd.in/d_zPJdTM
Like Comment
To view or add a comment, sign in
AKS Khan Pharmaceuticals Limited

3,048 followers
1mo Edited
Report this post
🌍 World Stroke Day: Act FAST! 🧠 Today, we come together to raise awareness on stroke prevention and the critical importance of recognizing stroke symptoms early. Remember the acronym FAST: Face: Is one side of the face drooping? Arms: Can the person raise both arms? Speech: Is speech slurred or unusual? Time: If you observe any of these signs, act quickly—call for help immediately! Early detection and rapid response can be lifesaving. Let’s spread awareness and educate our communities about the importance of recognizing stroke symptoms and acting FAST. Together, we can make a difference! #WorldStrokeDay #StrokeAwareness #ActFAST #CommunityHealth #AKSPharmacy #AKSDiagnostics
Like Comment
To view or add a comment, sign in
The PMD Foundation

158 followers
3mo
Report this post
Wondering how to share your story? We’re looking for information about you and your warrior such as: How old they are, When they were diagnosed, What symptoms led to diagnosis, What your day to day life looks like now, And where you may have found support. Your experience can provide comfort and connection to others in the PMD community, showing that no one is alone on this path. Join us in sharing your story to help others feel seen and supported. 💙 https://lnkd.in/dv6-3Znk
Like Comment
To view or add a comment, sign in
Minnesota Brain Injury Alliance

661 followers
3w
Report this post
Don't miss our last 2024 Lunch and Learn! Learn from a dynamic speaker with years of practical experience about some of the unusual symptoms and conditions that can make a stroke difficult to diagnose. You can register for this session here https://lnkd.in/g_cjnixu #CEU #StrokeEducation #LunchandLearn
1 Comment
Like Comment
To view or add a comment, sign in
Ruxmani Lying-In Hospital

23 followers
6mo
Report this post
May is National Stroke Awareness Month! 🧠 Let’s come together to raise awareness about stroke prevention, symptoms, and treatment. Recognizing the signs of a stroke can save lives. Remember the FAST acronym: Face drooping, Arm weakness, Speech difficulty, and Time to call 102. Early intervention is crucial. Spread the word and educate your loved ones about stroke. Together, we can make a difference! #stroke #strokeawarenessmonth
Like Comment
To view or add a comment, sign in
HCA Florida Palms West Hospital

1,609 followers
7mo
Report this post
Have you heard of B.E. F.A.S.T.? It's a handy acronym for recognizing stroke symptoms and taking action. Watch our video for details and learn how you could save a life. #PositiveImpact #StrokeMonth

B.E. F.A.S.T. to spot a stroke
Like Comment
To view or add a comment, sign in
Minnesota Stroke Association

81 followers
3w
Report this post
Don't miss our last 2024 Lunch and Learn! Learn from a dynamic speaker with years of practical experience about some of the unusual symptoms and conditions that can make a stroke difficult to diagnose. You can register for this session here https://lnkd.in/g_cjnixu #CEU #StrokeEducation #LunchandLearn
1 Comment
Like Comment
To view or add a comment, sign in
Lilly Gastroenterology

1,116 followers
10mo
Report this post
Delve into the ECCO 2024 dialogue on UC diagnosis and referrals. What are the most critical symptoms, and how can we overcome the global challenge of diagnostic delays?
Like Comment
To view or add a comment, sign in

46,010 followers

View Profile Follow

BridgeBio’s Post

Transcript

More Relevant Posts

B.E. F.A.S.T. to spot a stroke

Explore topics