Immune Deficiency Foundation
Immune Deficiency Foundation
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Decoding PI: Unraveling the GI connection
View a PDF of this presentation: primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdf
Peter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses the interesting link between the two.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
To learn more, volunteer, or donate, visit primaryimmune.org/donate.
Presented with support from Takeda, CSL Behring, Grifols, Accredo, ADMA Biologics, Amgen, Chiesi, Kedrion Biopharma, Pharming, and Sumitomo Pharma.
มุมมอง: 257

วีดีโอ

Decoding PI: Antibody deficiencies
มุมมอง 366หลายเดือนก่อน
Dr. Luke Wall discusses antibody deficiencies in this webinar from October 24, 2024. View a PDF of this presentation: primaryimmune.org/sites/default/files/Decoding PI. Ab Def. 10.24.24 Luke Wall.pdf The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Presented with support from Takeda, CSL B...
ChronicXTwenties: Heartbreakingly beautiful (Part 2)
มุมมอง 76หลายเดือนก่อน
Transcript: primaryimmune.org/sites/default/fi…20transcript.pdf In part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and con...
ChronicXTwenties: Heartbreakingly beautiful (Part 1)
มุมมอง 712 หลายเดือนก่อน
In this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee Cassie Mummert and Victoria Medl - discuss mental health coping strategies, spirituality, and the complications and joys of dating other people with rare diseases. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confront...
Bold Conversations: CGD and medical immigration with Susanna Raj
มุมมอง 582 หลายเดือนก่อน
Susanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada. Read Susanna's story: primaryimmune.org/resources/news-articles/determined-keep-moving-forward The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors,...
Decoding PI: Protecting yourself against covid, flu, and RSV
มุมมอง 3122 หลายเดือนก่อน
Decoding PI: Protecting yourself against COVID, flu and RSV This informative session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during challenging seasons. View Dr. Ward's slides: primaryimmune.org/sites/default/fil...
Overview of Wiskott-Aldrich syndrome: 2024 PI Conference
มุมมอง 1593 หลายเดือนก่อน
Overview of Wiskott-Aldrich syndrome: 2024 PI Conference
Integrative medicine and pain management - Living well with PI
มุมมอง 3243 หลายเดือนก่อน
Dr. Maeve O'Connor discusses integrative pain management approaches for primary immunodeficiency patients, including nutrition, stress management, and more. See a PDF of this presentation: primaryimmune.org/sites/default/files/IDF MEO AUG 2024.pdf Presented with support from Takeda, CSL Behring, Grifols, Accredo, ADMA Biologics, Amgen, Chiesi, Kedrion Biopharma, Pharming, and Sumitomo Pharma.
Bold Conversations: Inclusion in practice at the 2024 PI Conference
มุมมอง 1233 หลายเดือนก่อน
Transcript: primaryimmune.org/sites/default/fi…ranscription.pdf Immune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference. Dr. Nicole's conference session (The Elephant in the Exam Room): th-cam.com/video/kn7gM7hsGA8/w-d-xo.html
Hyper IgM overview: 2024 PI Conference
มุมมอง 2634 หลายเดือนก่อน
Gain an understanding of symptoms, criteria for diagnosis and available treatment options for Hyper IgM. Also learn tips and resources for managing a Hyper IgM diagnosis.
PI & aging: 2024 PI Conference
มุมมอง 5304 หลายเดือนก่อน
Learn about the unique challenges seniors face navigating a complicated diagnosis like primary immunodeficiency, and tips to overcome them. Increased complications of autoimmunity, G.I., cancer, chronic lung disease compounded by immunosenescence, concurrent comorbid diseases, frailty, isolation, and dealing with our complex health system, make it imperative that we understand and meet the need...
Hyper IgM syndrome: T cell markers as a guide to treatment & severity: 2024 PI Conference
มุมมอง 1824 หลายเดือนก่อน
Learn about Hyper IgM Syndrome and its clinical manifestations and about the ongoing study investigating the role of T cell markers in Hyper IgM syndrome. Also learn about the correlation between T cell markers and clinical severity and the potential complications of T cell markers for developing new and improved treatments for Hyper IgM syndrome.
Translating microbiology of infections into genetics of immunology: 2024 PI Conference
มุมมอง 1604 หลายเดือนก่อน
Translating microbiology of infections into genetics of immunology: 2024 PI Conference
Dermatology issues in the PI patient: 2024 PI Conference
มุมมอง 2194 หลายเดือนก่อน
Dermatology issues in the PI patient: 2024 PI Conference
Gene editing for X-linked agammaglobulinemia (XLA): 2024 PI Conference
มุมมอง 3524 หลายเดือนก่อน
Gene editing for X-linked agammaglobulinemia (XLA): 2024 PI Conference
The role of AI in the future of PI: 2024 PI Conference
มุมมอง 864 หลายเดือนก่อน
The role of AI in the future of PI: 2024 PI Conference
Meet the researchers: Clinical trials update: 2024 PI Conference
มุมมอง 1004 หลายเดือนก่อน
Meet the researchers: Clinical trials update: 2024 PI Conference
Meet the stars of Compromised: Life Without Immunity
มุมมอง 8194 หลายเดือนก่อน
Meet the stars of Compromised: Life Without Immunity
Legislative initiatives breakfast: 2024 PI Conference
มุมมอง 474 หลายเดือนก่อน
Legislative initiatives breakfast: 2024 PI Conference
Severe combined immunodeficiency (SCID) overview: 2024 PI Conference
มุมมอง 2574 หลายเดือนก่อน
Severe combined immunodeficiency (SCID) overview: 2024 PI Conference
Opening session: 2024 PI Conference
มุมมอง 3184 หลายเดือนก่อน
Begin the conference with everything you need to know about the next two days. This session will give you all the tips and tricks needed to make the most of your conference experience! To conclude the opening session, we will be awarding the Mary Rath Emerging Leader award and the Plasma Hero award.
Gene therapy: 2024 PI Conference
มุมมอง 2164 หลายเดือนก่อน
Break down the process of gene therapy, including how to access it, the overall procedure, and potential complications of undergoing this type of treatment. Also, learn which diagnoses are currently able to access gene therapy and learn about conditions that are being explored for this treatment method.
The elephant in the exam room: what your doctors wish you knew: 2024 PI Conference
มุมมอง 1724 หลายเดือนก่อน
The elephant in the exam room: what your doctors wish you knew: 2024 PI Conference
PI & respiratory health: 2024 PI Conference
มุมมอง 1174 หลายเดือนก่อน
PI & respiratory health: 2024 PI Conference
Common variable immune deficiency (CVID): Conversation with an expert: 2024 PI Conference
มุมมอง 7904 หลายเดือนก่อน
Common variable immune deficiency (CVID): Conversation with an expert: 2024 PI Conference
Immune to limits: Thriving in academics with PI: 2024 PI Conference
มุมมอง 264 หลายเดือนก่อน
Immune to limits: Thriving in academics with PI: 2024 PI Conference
Parents of children with SCID, CID, and complex PI: 2024 PI Conference
มุมมอง 464 หลายเดือนก่อน
Parents of children with SCID, CID, and complex PI: 2024 PI Conference
Emerging diagnostics & therapies for chronic granulomatous disease (CGD): 2024 PI Conference
มุมมอง 1054 หลายเดือนก่อน
Emerging diagnostics & therapies for chronic granulomatous disease (CGD): 2024 PI Conference
Managing food allergies with PI: 2024 PI Conference
มุมมอง 844 หลายเดือนก่อน
Managing food allergies with PI: 2024 PI Conference
The future is now: preparing for transition to adult care: 2024 PI Conference
มุมมอง 344 หลายเดือนก่อน
The future is now: preparing for transition to adult care: 2024 PI Conference

ความคิดเห็น

  • @kwinn6996
    @kwinn6996 8 วันที่ผ่านมา

    Good video but I recommend 1.5-2x speed

  • @martylund8411
    @martylund8411 12 วันที่ผ่านมา

    15:00 - This part hits way too close to home as a parent of an ID kid - way to close. I wish we could send all the flowers in the world to this mom and dad for their perseverance in work and prayer. Opened up to John 9:3 and it just hits different.

  • @katiescape
    @katiescape 13 วันที่ผ่านมา

    I have an auto immune disease, kinda the opposite problem where my immune system is fine, it just attacks my joints, tissues and ligaments sometimes even organs, but sometimes it 'feels' like living with no immunity because while my body is busy fighting itself it can't fight off anything else. I have been a 'poorly' person for aslong as I remember but only diagnosed officially with RA recently. I'm scared of the treatments, I am scared of not getting the treatments, my future feels so uncertain. Thank you Ironmouse for giving hope to those in the darkest of places.

  • @rioaditiyono8442
    @rioaditiyono8442 14 วันที่ผ่านมา

    eee... eee... aaa... aaa... 🙄

  • @kaseyboles30
    @kaseyboles30 21 วันที่ผ่านมา

    When, NOT if!, they get that beer there'll be a lot of ugly crying of happiness that day. Not ashamed to include myself in that group either.

  • @SubhraNil_Roy_26
    @SubhraNil_Roy_26 21 วันที่ผ่านมา

    I read your story in our biotechnology and It's application chapter ❤

  • @24voley
    @24voley 23 วันที่ผ่านมา

    My daughter died frm SCID too x

  • @LovelyFjord-zg9lu
    @LovelyFjord-zg9lu 27 วันที่ผ่านมา

    what is veins blood

  • @lindastiles4981
    @lindastiles4981 28 วันที่ผ่านมา

    I’m so sorry! My grandson was just diagnosed with this.. bless you

  • @lindastiles4981
    @lindastiles4981 28 วันที่ผ่านมา

    My grandson who is 17 months now was just diagnosed with this, He is such a beautiful child.. this is tough!

  • @lindastiles4981
    @lindastiles4981 28 วันที่ผ่านมา

    My grandson was just diagnosed with this, he is 17 months old now.. it took a long time to get diagnosed with this..

  • @takenname8053
    @takenname8053 29 วันที่ผ่านมา

    SUPER NICE

  • @dactal4444
    @dactal4444 หลายเดือนก่อน

    Great video was just diagnosed at 51

  • @songthanh896
    @songthanh896 หลายเดือนก่อน

    Thank you very much

  • @TotalRhythm
    @TotalRhythm หลายเดือนก่อน

    That’s sad

  • @Doyle-n4z
    @Doyle-n4z หลายเดือนก่อน

    Hello

  • @Doyle-n4z
    @Doyle-n4z หลายเดือนก่อน

    What does it mean for if your a,qn and your m,qn, is low

  • @garyhogue2367
    @garyhogue2367 หลายเดือนก่อน

    Yes I have Medicaid I am disabled I was wondering if there’s any financial help club for anything I can get

  • @wendymcdonald5145
    @wendymcdonald5145 หลายเดือนก่อน

    I’m 59 and just diagnosed. Can one dose of Rituximab cause CVID? I’ve got inflammation, all over and sore joints, no doctor has any idea what to do about inflammation.

  • @il3mendo
    @il3mendo หลายเดือนก่อน

    Any autoimmune disease that you developed ?

  • @il3mendo
    @il3mendo หลายเดือนก่อน

    Electrophoresis never showed any sign of immunodeficiency despite 4 active autoimmune diseases presents while having hyper eosinophilia. Should I connect the dot with IgE/nk/Fox3p ?

  • @il3mendo
    @il3mendo หลายเดือนก่อน

    Celiac disease with hypothyroidism, autoimmune gastritis, pernicious anemia, cerebellar ataxia (gad 65 and ttg6) and my problem was due to the fact that i just produced Ige (no transglutaminase 2/tpo antibody). Homocysteine was a marker for my vitamin b12 deficiency, endoscopy for the celiac and gastritis diagnosis and ultrasound for my Hashimoto. Now I understood the issue with the Fox3p.

  • @AngeDeJmusic
    @AngeDeJmusic หลายเดือนก่อน

    man this was hard to listen to without tearing up. This is why I love Mouse, she is such a strong person and makes living with illness less scary.

  • @radhika__2146
    @radhika__2146 หลายเดือนก่อน

    Excellent talk, thank you Dr Sullivan!

  • @radhika__2146
    @radhika__2146 หลายเดือนก่อน

    Thankyou IDF and Dr Wu for this lecture! The way slides were delivered is commendable.

  • @TheHyperMD
    @TheHyperMD 2 หลายเดือนก่อน

    Thank you! Can you please explain why they can have brain lesions

  • @lauraseiden5006
    @lauraseiden5006 2 หลายเดือนก่อน

    What if you refuse ivig do you die if you get to low ?

  • @MusicmatchJukebox
    @MusicmatchJukebox 2 หลายเดือนก่อน

    “I just want to have a beer with you someday.” I can’t stop crying.

  • @DarkKnightofIT
    @DarkKnightofIT 2 หลายเดือนก่อน

    People are trying to reduce how much plasma can be donated/used!? WTF

  • @ProfessionalWidow291
    @ProfessionalWidow291 2 หลายเดือนก่อน

    Unfortunately, my adult Son's CVID was not discovered until after he was diagnosed with NHL follicular at age 30 years. His IgG, IgA, and IgM were very low , and had he received treatment for lymphoma, the low IGs would have most certainly been attributed to the treatment and not investigated as a primary immunodeficiency. He has just commenced IVIG and we are hoping to see some positive results.

    • @immunedeficiencyfoundation
      @immunedeficiencyfoundation 2 หลายเดือนก่อน

      We're sorry to hear how difficult it's been, but hopefully treatment will help!

  • @cv21a
    @cv21a 2 หลายเดือนก่อน

    Thank you guys for uploading. I am recently diagnosed with CVID and this has been most helpful.

  • @RkiyaTouil
    @RkiyaTouil 2 หลายเดือนก่อน

    Plz

  • @Aging_Casually_Late_Gamer
    @Aging_Casually_Late_Gamer 2 หลายเดือนก่อน

    Every time i feel like i dont wanna donate platletes because im tired. I rememeber mouse

  • @RkiyaTouil
    @RkiyaTouil 2 หลายเดือนก่อน

    Plz any one for communicaton my son is suffer from it He is 5 year old plz any one put his number here to ask him about this illness.

  • @historychannel123
    @historychannel123 2 หลายเดือนก่อน

    I have also been diagnosed with this disease. I also live in Georgia.

  • @KilanPruna
    @KilanPruna 2 หลายเดือนก่อน

    17969 Adams Avenue

  • @BJ_Freeplay
    @BJ_Freeplay 2 หลายเดือนก่อน

    ah yes. Insurance passionately hating young people, a tale as old as time. I'm sure a TON of us can relate the emotional fall out of being told you must be healthy because you're like 20. It's the passionate lover to the phrase "This is the healthiest time of your life" when that's a nightmare to be told

    • @Jemilylover
      @Jemilylover 25 วันที่ผ่านมา

      Or one of the worst “you don’t look sick.”

  • @KeenedakbeKebabs-f9l
    @KeenedakbeKebabs-f9l 2 หลายเดือนก่อน

    Herman Oval

  • @lynnwong5854
    @lynnwong5854 2 หลายเดือนก่อน

    Are plasma donors screened for infectious diseases like Hepatitis A-E, Epstein Barr, shingles, HIV, herpes and Covid before donating their body fluids?

    • @immunedeficiencyfoundation
      @immunedeficiencyfoundation 2 หลายเดือนก่อน

      Yes, thoroughly. Plasma is _highly_ regulated -- donors are screened and donated plasma is tested rigorously before it's used in medicine.

  • @bloodydjehuty
    @bloodydjehuty 2 หลายเดือนก่อน

    and it's so great knowing Mousey is the number one Twitch streamer. her and Conner's friendship is the absolute best. and honestly going through hard times myself... but if Mousey can can do it... then I can find a way.

  • @thehappywerewolf
    @thehappywerewolf 2 หลายเดือนก่อน

    Being Agrophobic since 98 sometimes I cry watching being 51 my life has been a bad joke and I'm the punch line.

  • @Thatautisticdad
    @Thatautisticdad 2 หลายเดือนก่อน

    Would love to be able to get in touch with you. Please and would love to share my story and here yours aswell

  • @Thatautisticdad
    @Thatautisticdad 2 หลายเดือนก่อน

    Thankyou for this.

  • @TedChristine-x9y
    @TedChristine-x9y 2 หลายเดือนก่อน

    Schumm Pike

  • @Nyx9533
    @Nyx9533 2 หลายเดือนก่อน

    I can't This song is way too sad 😭

  • @andymartin6084
    @andymartin6084 2 หลายเดือนก่อน

    2:20 2023 -> most subscribed female streamer. 2024 -> most subscribed Twitch streamer (of all time). Well deserved! congratulations!

  • @putsticker
    @putsticker 2 หลายเดือนก่อน

    People might not realize that Mousey streaming for a month straight is very much like her equivalent of Connor's cyclethon. From being unable to stream for more than an hour at her worst state, to now rallying people from around the world to support the IDF, the records she's smashed are merely the by-product of the amazing work she's done to give back to the PI community and those around her. Her contributions to the IDF, the achievements & respect she's earned through her efforts, and her value as an individual and role model won't be undone from someone overtaking her sub record, no matter how many people wish that upon her or death threats she receives. At the end of the day, this performer spends the energy she has lifting others up and using her platform to serve more than just herself. Her gremolin antics are a distraction from the fact that she's a powerful leader operating from her bedroom: the Demon Queen herself.

  • @bloodydjehuty
    @bloodydjehuty 2 หลายเดือนก่อน

    I'm getting Kingdom Hearts vibes from this. thank you being an inspiration to me Mousey.

  • @MaxineJulianaMolina
    @MaxineJulianaMolina 2 หลายเดือนก่อน

    IM SOBBINGG WHAT

  • @zeralf
    @zeralf 2 หลายเดือนก่อน

    Connor and Mousey are the goats. Thank you IDF for helping so many people. I wish you all good health and happiness.