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IgG4-RD Life
United States
Приєднався 1 кві 2024
A channel by patients, for patients, and allies.
We are not medical professionals--we are patients sharing our experience and do not dispense medical advice.
We are not medical professionals--we are patients sharing our experience and do not dispense medical advice.
IgG4-RD Life Episode 15 - Patient Reflections about the IgG4ward! Jam
Co-hosts Alex & Mahsa sit down with Kim and Lindsey to discuss their patient experiences at the IgG4ward! Jamboree event that took place in early November of this year.
From meeting with patients, to learning about IgG4 Related Diseases, the JAM was filled with allies, knowledge, and love!
IgG4-RD online resources:
Living with IgG4-Related Disease (facebook group): groups/igg4rd/
The International IgG4 Support Group (facebook group): groups/623572183028526/
IGG4 (facebok group): groups/15451...
IgG4-RD CONNECT (apply to join): bit.ly/4cXap8B
Igg4 related systemic disease Australia user group (EXCLUSIVE TO PATIENTS RESIDING IN AUSTRALIA ONLY): groups/15451...
ERN RE-CONNECT: reconnet.ern-net.eu/disease-i...
IgG4ward! Community (apply to join): igg4ward.org/community/
Amgen's IgG4-RD rare disease page: www.igg4rdoutloud.com
From meeting with patients, to learning about IgG4 Related Diseases, the JAM was filled with allies, knowledge, and love!
IgG4-RD online resources:
Living with IgG4-Related Disease (facebook group): groups/igg4rd/
The International IgG4 Support Group (facebook group): groups/623572183028526/
IGG4 (facebok group): groups/15451...
IgG4-RD CONNECT (apply to join): bit.ly/4cXap8B
Igg4 related systemic disease Australia user group (EXCLUSIVE TO PATIENTS RESIDING IN AUSTRALIA ONLY): groups/15451...
ERN RE-CONNECT: reconnet.ern-net.eu/disease-i...
IgG4ward! Community (apply to join): igg4ward.org/community/
Amgen's IgG4-RD rare disease page: www.igg4rdoutloud.com
Переглядів: 34
Відео
IgG4-RD Life Episode 14 - Kimberly Skelly
Переглядів 3428 днів тому
Co-hosts Alex and Mahsa sit down with Kimberly Skelly, a registered and a flight nurse, a fellow IgG4-RD patient, and a dedicated patient advocate. Kim shares her powerful journey to diagnosis, detailing the challenges she faced along the way, including misdiagnoses and cancer scares, as well as undergoing numerous tests, scans, and biopsies before finally receiving an IgG4-RD diagnosis. Togeth...
IgG4-RD Life Episode 13 - Lindsey, Part 2
Переглядів 622 місяці тому
Co-host Mahsa and Lindsey continue discussing Lindsey's journey with IgG4-RD, and all the other diagnoses she received in the process, such as Still's disease, cancer scares, and the fibro-inflammatory mass biopsy that finally confirmed her diagnosis for IgG4-RD. Lindsey discusses the treatments that have helped her get to today and all the wonderful and inspiring outdoor activities that she ha...
IgG4-RD Life Episode 12 - Lindsey, Part 1
Переглядів 532 місяці тому
Co-host Mahsa sits down with fellow IgG4-RD patient, Lindsey, who shares her journey: how it all started and what it took to get to diagnosis. Listen in as they share commonalities in their journeys connecting with the IgG4-RD community helps us feel less alone and brings attention to symptoms we might not have considered before. Be sure to tune in when we release part 2, as Lindsey discusses w...
IgG4-RD Life Episode 11 - Interview with TREND Community
Переглядів 643 місяці тому
Learn from experts in the rare disease community as co-hosts, Alex and Mahsa, interview Maria Picone and Christopher Defelice, the co-founders of TREND Community. Maria and Chris share their personal journey as parents of a child with a rare disease, Prader-Willi syndrome (PWS), and how TREND Community was born! Maria and Chris explain how the IgG4-RD Connect platform was created, its purpose a...
IgG4-RD Life Episode 10 - IgG4-RD Connect Launch Report Part 2
Переглядів 394 місяці тому
Co-hosts Alex & Mahsa finish reviewing the IgG4-RD Connect Launch Report, that launched earlier this year!
IgG4-RD Life Episode 9 - IgG4-RD Connect Launch Report
Переглядів 214 місяці тому
Co-Hosts Alex & Mahsa go over the Launch Report from the IgG4-RD Connect group that launched earlier this year on the Discord platform. To download a PDF of the report, go to bit.ly/4dF481J To join the IgG4-RD Connect group, please go to bit.ly/4cXap8B Tune in next week for part two!
IgG4-RD Life Episode 8: Self Care for IgG4-RD Patients
Переглядів 765 місяців тому
Host Alex Streczyn gives some tips on self care for people living with chronic health issues. This is just a start. Do you have other tips you'd like to add? Put them in the comments? We'll talk more about ways to take care of ourselves in future episodes we'd love to include your ideas. Resources: - Living with IgG4-Related Disease (facebook group): groups/igg4rd The International...
IgG4-RD Life Episode 7 - Patient/RAM Interview (Nadia Bodkin, PHARM.D, M.S.)
Переглядів 865 місяців тому
Co-Hosts Alex & Mahsa interview a fellow IgG4-RD, and other rare diseases Patient Nadia Bodkin. Nadia is also the founder of Rare Advocacy Movement (RAM), and has been helping the rare disease world and its patients in many ways. Below are links to RAM & RARE 360. As discussed in this episode, if you are a patient who has been wrongfully treated by any market research group/company, please subm...
IgG4-RD Life Episode 6 - Patient Interview (Richard Cooley)
Переглядів 1946 місяців тому
Co-hosts Alex & Mahsa interview Richard Cooley, an IgG4-RD patient living in France. Hear Richard's journey through diagnosis, treatment, and life after diagnosis. We will definitely be talking to Richard again soon, one episode is not merely enough for one's journey, as it as an ongoing one. If you are a patient, and would like your story heard/shared, please comment below or contact your co-h...
IgG4-Rd Life Episode 5 - Rituximab/rituxan experience
Переглядів 1176 місяців тому
Alex & Mahsa go over their individual experiences with rituxan infusions, hoping to help and reduce some of the fear felt around the treatment and it's process. Have you had Rituximab/rituxan or any of its biosimilar sister drugs like ruxience/truxience? comment your experience below!
IgG4-RD Life Episode 4 - Flares Vs. Relapse
Переглядів 537 місяців тому
On this Episode of IgG4-RD Life, Alex & Mahsa describe flares, and the types of flares they each experience. and what sets flares apart from relapses? Comment below with some flares that you experienced!
IgG4-RD Life Episode 3 - Struggles in Research, TREND community and Igg4Rd-CONNECT
Переглядів 1517 місяців тому
Listen to your IgG4-RD Life hosts Alex & Mahsa discuss the variables that affect researches and trials, what is lacking, what is working, and where there is hope! Alex & Mahsa also discuss their new research platform IgG4-RD Connect, with the TREND Community, which was launched earlier this year. Join the IgG4-RD Connect platform via the link below! docs.google.com/forms/d/1FQ-tZJhNzi_2zTbja1OO...
IgG4-RD Life Episode 2 - Journeys
Переглядів 1578 місяців тому
Hear the Co-hosts' Journeys to diagnosis, struggles and successes, and the Spoon Theory!
Excellent interview and thank you for sharing.
Glad you enjoyed it! Let us know if you'd like to join us for an episode!
Nadia Bodkin thank you for all that you're doing for the rare disease world! 🎉❤
I love your podcast 😊 and really enjoyed your guest’s story - pretty incredible. His lifestyle adjustments are really inspiring. He has such a calming presence. “Never give up on your dreams.” ❤
Thank you both for all you do.
Our pleasure!
Great discussion about flares. I know these manifest differently in everyone. My flares manifest as extreme fatigue accompanied by deep pain in my muscles and/or joints.
ua-cam.com/video/0UFS4EVgf3U/v-deo.htmlsi=IgeENnkb_iuJjXWe This guy give some interesting talks on igG4 , reckon be good hook up for a podcast ..great work btw ,😊 look forward to more from you 😊
Thank you for this! 💕🙏
Alex and Mahsa, you are amazing advocates and survivors! Both your stories are incredible and I’m so happy you are doing better. Thank you for sharing your stories! I can only hope one day I am on the sharing end with resolution in my own situation. The struggle of this journey is so intense and so frustrating. Thank you for all that you are doing!
Awww!!! Thank you so much! We appreciate you, too. Our health, as patients, is a moving target as we work toward remission.
We look forward to sharing your story too! You've been through quite alot, and others can learn from your struggles and successes as well!
Great presentation, thank you all , for bringing lots of knowledge and hope. I’m sure this podcast was a relief to many of us as patients or family members. Good luck🙏
Thank you so much!
Our pleasure
Thanks for putting this together and sharing this info!
Thank you!
So great that you are putting a voice to this disease! ❤
Thank you so much!
Awesome job ladies! So proud of both of you for spreading the word! -Sunny
Our pleasure!