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It Happened To Me Podcast
Добавлен 8 окт 2022
The mission of our podcast is to support you as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you.
We encourage you to learn more at ItHappenedToMePod.com.
Please submit your guest suggestions, comments, questions, ideas, and feedback for the show at ItHappenedToMePod@gmail.com.
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our graphic designer.
And remember, it happened to me…I’m not alone and neither are you.
We encourage you to learn more at ItHappenedToMePod.com.
Please submit your guest suggestions, comments, questions, ideas, and feedback for the show at ItHappenedToMePod@gmail.com.
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our graphic designer.
And remember, it happened to me…I’m not alone and neither are you.
How a Kidney Transplant Saved Zach Ship’s Life at 19
In this episode of It Happened To Me, hosts Cathy and Beth sit down with Zachary Ship, a remarkable individual who has faced incredible health challenges. This is part one of the conversation where Zach shares the powerful story of how his mother, Shari, donated a kidney to save his life. Shari was a guest on our last episode of It Happened To Me (#43). At just 19 years old, Zach was diagnosed with end-stage renal failure due to an autoimmune disease. He takes us through the emotional rollercoaster of receiving a life-saving transplant from his mother while navigating the challenges of young adulthood.
From the first signs of illness as a teenager to his recovery after the transplant, Zach...
From the first signs of illness as a teenager to his recovery after the transplant, Zach...
Просмотров: 30
Видео
Shari Ship on Donating Her Kidney to Son
Просмотров 1714 дней назад
Shari Ship's story is a remarkable tale of a mother's unwavering love and sacrifice for her son. As a widow and caregiver to her 97-year-old mother, Shari selflessly donated a kidney to her son Zachary, who was diagnosed with a rare autoimmune disease called membranous nephropathy that attacked his kidneys. Despite the challenges of caring for her ailing husband who passed away from lung cancer...
Huntington’s Disease with Tanita Allen
Просмотров 43Месяц назад
In this episode of It Happened To Me, hosts Cathy and Beth are joined by Tanita Allen, a resilient advocate for Huntington’s Disease (HD) and the author of the touching memoir, We Exist. Tanita shares her personal journey with HD, from her initial symptoms and challenging diagnostic process to her current role as a self-advocate and member of The HD Community Advisory Board. Tanita discusses th...
Overcoming Crohn’s Through Pilates with Ryan Hodgkinson
Просмотров 162 месяца назад
In this insightful episode of It Happened To Me, we are joined by Ryan Hodgkinson, a highly respected Pilates instructor whose journey into fitness was profoundly shaped by his personal battle with Crohn’s disease. With over two decades of experience in martial arts and personal training, Ryan has developed a unique approach to Pilates that caters to the individual needs of his clients. Ryan Ho...
Genetic Testing for Rare Diseases with Amy Patterson
Просмотров 522 месяца назад
Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias. Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics cli...
Dr. Tara Zier on Stiff Person Syndrome
Просмотров 2443 месяца назад
In this enlightening episode of It Happened To Me, we are joined by Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation. Dr. Zier shares her personal journey with Stiff Person Syndrome (SPS), a rare and debilitating autoimmune disorder, and discusses her mission to advance research, treatments, and awareness for this condition. Introduction: Dr. Tara Zier, founder of the Sti...
Congenital Hyperinsulinism with Advocate Julie Raskin
Просмотров 393 месяца назад
In this enlightening episode, we are joined by Julie Raskin, Chief Executive Officer of Congenital Hyperinsulinism International (CHI). Julie's journey began when her son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin leading to severe hypoglycemia. Determined to improve Ben’s life and the lives of others affected by HI, Julie co-founded...
Cochlear Implant Surgery and Recovery with Marc Bassin
Просмотров 714 месяца назад
In the last episode of "It Happened To Me," (Episode 35) Marc Bassin shared his experience of sudden hearing loss in his left ear. After four years and countless healthcare providers, he went through with having a cochlear implant surgery. The first interview in Episode 35 was recorded before his surgery. If you haven't yet listened to Marc's previous episode on the podcast, we highly recommend...
Sudden Hearing Loss with Marc Bassin
Просмотров 2144 месяца назад
Despite leading an active lifestyle, Marc experienced a sudden and unexpected loss of hearing in his left ear, dramatically altering his daily life. Join us as Marc shares his courageous journey from the onset of hearing loss to his upcoming cochlear implant surgery. Marc is not your typical real estate professional. With a penchant for adventure, he spends his leisure time biking thousands of ...
Bloom Syndrome with The Yasbins
Просмотров 1065 месяцев назад
In this episode we have a special discussion lined up on Bloom Syndrome, featuring our guests Melanie and Lorne Yasbin, who will share their family's experience with this rare genetic disorder. Melanie received her J.D. from Villanova School of Law, and a B.A. in Political Communications with a minor in religion from The George Washington University. After working for the Federal government for...
Tay-Sachs and Grief with Myra Sack
Просмотров 905 месяцев назад
In our last episode (#32), we had the privilege of speaking with Matthew Goldstein, CEO of JScreen, about genetic screening. In this conversation, we are honored to welcome his wife, Myra Sack, a writer, coach, and activist, to share her family's journey and honor the memory of their daughter, Havi, who passed away from Tay-Sachs disease in 2021. Myra Sack is not only a dedicated parent but als...
Tay-Sachs and Carrier Screening with Dr. Matthew Goldstein
Просмотров 1316 месяцев назад
A physician-scientist father shares his heartbreaking story of the death of his daughter who was diagnosed with Tay-Sachs disease and how it motivated him to become the CEO of JScreen to prevent this experience in other families. Matt Goldstein is a physician-scientist and entrepreneur. He has founded companies, built R&D teams, and led strategy and execution of both pre-clinical research and c...
Blood Transfusion Therapy with Lori Harada & Carly Newton
Просмотров 376 месяцев назад
In this episode we are learning about blood transfusion therapy with a focus on the patient experience. Our Executive Producer, Kira Dineen, joins as a co-host since she has a scientific background. Lori Harada is a registered nurse who also serves as Senior Manager, Technical Excellence Team, for Terumo Blood and Cell Technologies. This is a team of 12 specialists who provide education and sup...
Rare Disease Advocacy with Wes Michael
Просмотров 297 месяцев назад
In honor of Rare Disease Month, we're thrilled to welcome a special guest to our podcast episode: Wes Michael, President, and Founder of Rare Patient Voice. With over two decades of experience in rare and orphan diseases, Wes has dedicated his career to amplifying the voices of patients and caregivers in medical research and development. Join us as we delve into the story behind Rare Patient Vo...
Exploring the Potential of Artificial Corneas with Dr. Esen Akpek
Просмотров 947 месяцев назад
In this riveting episode of 'It Happened to Me', join co-hosts Cathy Gildenhorn and Beth Glassman as they sit with Dr. Esen Akpek, a leader in corneal and stem cell transplantation. Listen as Dr. Akpek sheds light on emerging research around a groundbreaking synthetic corneal device. This conversation is a beacon of hope for those at high risk of failure from traditional donor corneal transplan...
Prevention of Blindness Society Interview
Просмотров 488 месяцев назад
Prevention of Blindness Society Interview
Wolfram Syndrome Expertise from Dr. Fumihiko Urano
Просмотров 1,1 тыс.9 месяцев назад
Wolfram Syndrome Expertise from Dr. Fumihiko Urano
Pancreatic Cancer with Patient Advocate Leslie Waldman
Просмотров 1489 месяцев назад
Pancreatic Cancer with Patient Advocate Leslie Waldman
Neuro-Ophthalmic Disorders with Dr. Andrew Carey
Просмотров 9610 месяцев назад
Neuro-Ophthalmic Disorders with Dr. Andrew Carey
Autoimmune Conditions with Dr. Colby Kash
Просмотров 7210 месяцев назад
Autoimmune Conditions with Dr. Colby Kash
Papillary Thyroid Cancer with Carly Flumer
Просмотров 2511 месяцев назад
Papillary Thyroid Cancer with Carly Flumer
Wolfram Syndrome with Parent Pat Gibilisco
Просмотров 6011 месяцев назад
Wolfram Syndrome with Parent Pat Gibilisco
Pierre Robin Syndrome with Corinne Merlino
Просмотров 160Год назад
Pierre Robin Syndrome with Corinne Merlino
Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum
Просмотров 149Год назад
Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum
Mental Health Help with Social Worker Tamara Blum
Просмотров 272Год назад
Mental Health Help with Social Worker Tamara Blum
Amyotrophic Lateral Sclerosis (ALS) with Brooke Eby @limpbroozkit
Просмотров 22 тыс.Год назад
Amyotrophic Lateral Sclerosis (ALS) with Brooke Eby @limpbroozkit
Multifocal Motor Neuropathy with argenx
Просмотров 838Год назад
Multifocal Motor Neuropathy with argenx
For myself: I have found a portable percussion massager to help disrupt localized spasms. I use a healthywave PEMF mat at home 3 times a day. I went full keto 4 months ago and am transitioning to carnivore for the winter. The mat, diet, and massager have helped a lot. Also practicing lymphatic massage "the big 6" daily, and fascia massage and breathing exercises. I'm truly getting my quality of life back
Wow! Just an amazing podcast; so inspiring too! 🥰🎈❤️😘
We love you, Brooke!
Fibromyalgia
Where do I join you please , SPS is a battle zone for me now,
I,m progressive, Broken knee for example, Lost independence,
My B/ P goes through the roof with touch, And I can’t have therapy, Touch to painful ,
Try pemf therapy. Clinical ones are stronger, but I can't travel easily in a vehicle (and can't drive anymore) So I bought a healthywave pemf therapy mat to use at home several times a day. That in conjunction with keto-carnivore diet, plus "the big 6" lymphatic massage and fascia release breathing techniques has helped. I also keep a percussion massager handy to help disrupt spasms. There is hope! I'm getting my life back since starting to treat myself at home. I went months without any good moments, and now I have good days (not normal yet, but better) There is Hope.
I misdiagnosed, mistreated , and it took me over ten years to find the right Dr, And hospital,
So very sorry ,
I'm someone who has personally felt the devastation of ALS. I just lost my classmate Steve last month. He was the 4th person I knew to pass away from ALS. This disease is not as rare as they would like us to think. The more faces we have representing ALS, the better. Thank you, Brooke, for being one of those faces. May God bless you and keep you. You are in my prayers 🙏 ❤️ Jan
I am a 77 year old Scotsman and I started to get itchy blisters about 3 months ago in April 2024. After 3 months of getting no where on my own I finally made an appointment to see my doctor/GP on 4 July 2024 ! He said he suspected Bullous Pemphigoid and he took a swab and sent it to the laboratory for analysis so I hope to get a firm diagnosis soon. In the meantime I am researching to see what I kind find out about BP. Your podcast has been excellent and I identified with everything Dr Naomi said. At this early stage of my own journey I felt she gave me hope and an insight into medications that might be involved and organisations that might be useful IPPS( International P& Pemphigoid Support group) plus BP Warriors on Facebook. Many thanks again!
Thanks for hosting this. I wish this could be a live event so we could ask our questions. I wonder if the artificial cornea works but doesn't function after 7y is it possible to repeat the surgery and have the same success rate. Also if the patient already had glaucoma, still wise to try the artificial cornea surgery? My mom already had cornea transferred 2 times to each eye and lost her vision.
Bravo Leslie! מזל טוב on your grandchildren!
Very interesting news for ALS patients out of the University of Saskatchewan in Canada. ruclips.net/video/-ucjHpjlvQo/видео.html
Your RUclips video content is so good. However the video does not get many views. Because your RUclips channel has some problems. Do you want to know about the problems?
you are so young..i lost my wife at 45 yrs old ..
Brooke is amazing. My 85 year old mother was diagnosed with bulbar ALS 1 year ago. She’s had a feeding tube for 9 months & cannot talk anymore. Very sad. She only has a few months left.
I’ve heard many ALS stories, they’re all touching, but Brooke’s ability to clearly explain this disease and it’s subtleties and nuances is impressive. She’s a great spokesperson - her looks help too, of course.
My 1st Doctor from private hospital said it's ALS i went also in public hospital the doctor said it's motor neurone disease. What is the difference of 2?
Same.
Hi Isaiah, that's a great question. ALS is a type of motor neuron disease. Here's a bit more information from Johns Hopkins in case it is helpful: www.hopkinsmedicine.org/health/conditions-and-diseases/amyotrophic-lateral-sclerosis-als#:~:text=ALS%20is%20a%20fatal%20motor,thinking%2C%20seeing%2C%20or%20hearing.
Great video
Our names are Chris and Pippa Roberts from Scotland UK. Our son Joshua was born with Blooms Syndrome in 1999. When diagnosed we had no support and the doctors in the UK could not give us any advise as with it being so rare there was no record, with them, of any other people with Blooms in the UK. So the genetics specialist in John Radcliffe Hospital arranged for us to travel to New York to meet Dr German the 3rd and Dr Maureen Sanz. We had some very good friends and we had support in getting us there and Richard Branson from Virgin flew us to New York at his expense. We found out so much more when we arrived and we all had the genetic tests to see if we had the Ashkenazi Jew gene. None of us did but both Pippa and I have the mutated gene. My grandfather was from the Ukraine, but was not Jewish. Josh has all the symptoms the guys are talking about. Josh was born 12 weeks early and came out weighing 2lb. He had a blood transfusion and that’s when they found the defected gene. He is small, 5 foot, suffers with diabetes type 2. He is healthy at the moment and is monitored by the doctors here and has annual MRI scans and endoscopes and colonoscopies along with various blood tests and gene appointments. Do you guys know of any others we can speak to, especially in the uk? We haven’t looked at the website as when he was diagnosed in 1999 there wasn’t anything.
I’m 60 and just got diagnosed with bp and yes I went through this also the itchiness was insane
My mother just have BP at 85 years old
There’s a doctor that is running a trial with ALS with ketogenic diet and fasting : ruclips.net/video/9MX83IKeIvc/видео.htmlsi=yn_3twxZjqRC-h6N And check out this video, too: ruclips.net/video/t91rTD0k0SA/видео.htmlsi=7nhAEqL5DZXpWQwA
😢
My heart breaks for this family. Sending so much love to Myra and Matt ❤
I just got the diagnose, after almost 4 years with dropfoot, and its still just my legs just like you. I live in Denmark
My symptoms are exactly like Jennifers. I just went to the Facebook page. And I had the most stress in my life before this started. So much stress that I thought for sure I would have a heart attack.
Would you be interested in being a guest on UHTM?
I would like to share that Dr. Carey is my neuro ophthalmologist and my hero. He has helped me tremendously with my idiopathic intracranial hypertension condition. I have been under his care for more than 5 years and I can say he is the best of the best at Wilmer Eye Institute in MD.
You need to have a methylmalonic acid blood test. You might just have a low B12 at the tissue level, which causes symptoms that are often misdiagnosed as ALS. A normal B12 serum test is no good, you need to have the methylmalonic acid test. When this acid is elevated, it means your tissue B12 is low. This acid will eat the myelin sheaths off your nerves. It also blocks enzymes in the urea cycle that convert ammonia to urea, which causes an elevated ammonia level.
She is so pretty ❤😢
So if she was ugly you wouldn't care basically
Brooke is a beautiful soul and she looks beautiful too. She will make a difference for this nasty disease. I will definitely be contributing to the fundraising for ALS. I will be praying for this cause. This is a great channel and I will check out your other videos. ❤️🇨🇦🙏
If newly diagnosed with ALS and just starting to show symptoms I would think medication that will halt or reverse would be fabulous. It is heart wrenching to know it failed for patients who were in further decline. Keep working on something for them, but that one medication should pass and be given to those just diagnosed.
I am so sorry
Is there a medicine ??
@@RobdeKlerk-qg6lc I heard they were waiting on something from the FDA, I am not sure if there is or isn’t. Truth be told not enough resources are spent on finding a cure or a medication to slow the progression significantly. Right now I believe the only approved medications they have will possibly extend life approx 6 moths. 25 years ago the approved or medication in trials possibly extended life by 3 months. Not much progress in 25.
@@luzperez5251 I do not have ALS my cousin, she is 52 was recently diagnosed and she has Bulbar ALS, it is more aggressive as it starts with having problems swallowing and slurred speech, the other starts in the limbs. As I said in my initial comment, this disease is heartbreaking and little to no hope for those diagnosed, it’s terminal.
The 25 year old one put me in the hospital with sky rocketing blood pressure. I'm doing fine with the next one. Number newest is digusting!!! Tastes like grapefruit rinds ground up in a drink. Plus diarrhea after consumption...no way to live.
I have genetic ALS. I relate to so much of your journey! I am 72 and i thank God for letting me live this long!
It killed my dad and youngest brother
I have heard about people developing ig after lyme disease . I have had lyme and lots of strange neurogical symptoms so did a bjt of googling . Not saying that it is the case here. Of course not, but it is worth considering.
<3
Brook you're a inspiration a quick question for you. Have you thought of stem cell to help or is that something possible. Just a nugget to ask you in my prayers ❤❤❤❤
There is no evidence that stem cell treatments do anything for MND. There are clinics who offer it and make all kinds of claims, but they are nothing but money-grabbing scammers.
Amen Brooke this disease and als diagnosis is very hard hard to deal with I considered suicide and cried two. Follow u and yours progress😢
i was diagnosed one week ago today. what made you change your mind? i am wondering what to do…
How do I find Jennifer on Facebook MMN support groupm
Here: MMN Multifocal Motor Neuropathy WARRIORS
Glad I found y’all Thanks for sharing yr story
Multifocal Motor Neuropathy has changed my life.
Hello ladies. Thank you for sharing your story. I can relate to Jennifer. I was diagnosed with MMN back in 2017. I was originally diagnosed with ALS, but after a barrage of diagnostics (including the EMG/Nerve Conduction testing) I was finally diagnosed with MMN. My disease affects both of my hands pretty severely and my feet, to a lesser extent. I have been receiving IVIG for two consecutive days every 28 days and it has helped, though I feel like I’ve plateaued with any progress for the last couple of years. Best wishes to you, Jennifer. It’s so comforting to hear someone else who is going through this journey since there aren’t many of us. ❤😊
Prayers go out to you. Stay in the moment, and talk to Jesus, every day. He will become your best friend.
If your god is real , they're responsible for this
If god exists, why do good people get struck down with illnesses like this? But the worst type of people live a long healthy life? There is no GOD...trust me. I used to believe there was but it's all nonsense. It was something that was created to keep people on the straight and narrow. And probably to help people with the fear of dying.
God is an imaginary friend for grown-ups. Snap out of it, just like all of the thousands of other gods man has invented, the god of the bible does not exist.
It was challenging and unbearable because of how critical my health situation was. but I am grateful and happy to have ordered Dr Aluda herbal supplements on RUclips which I used to cure my AL'S disease:
ALS its like expiration date on human beeing. Its a gift, not so many ppl knows when they are suppose to die.
Tell that to Als victims.
A gift? That's one gift I wouldn't want😢
Sure. Nothing like a gift that destroys you day by day and makes life horrifying to try to live through to the end. If you think it is a gift, I wish you the luck of having it bestowed upon you.
😊 Promo>SM
Brooke, you are an inspiration and so brave in the way you are dealing with this. Hopefully you remain slow progressing until they can find a cure. There is a wonderful man over here Charlie Bird that has raised over 3 million euro in one year for MND research. It just needs funding, as I'm sure their is a cure out there. That group for young woman is brilliant, and you can share your positivity with them as well as the rest of the world. You have found your purpose x
What an amazing young woman. I believe you will help many. Sending prayers to you.