Immune Deficiency Foundation
Immune Deficiency Foundation
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Decoding PI: Antibody deficiencies
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%20PI.%20Ab%20Def.%2010.24.24%20Luke%20Wall.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.
มุมมอง: 264

วีดีโอ

ChronicXTwenties: Heartbreakingly beautiful (Part 2)
มุมมอง 5921 วันที่ผ่านมา
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 6328 วันที่ผ่านมา
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 50หลายเดือนก่อน
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 280หลายเดือนก่อน
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 143หลายเดือนก่อน
Overview of Wiskott-Aldrich syndrome: 2024 PI Conference
Integrative medicine and pain management - Living well with PI
มุมมอง 3102 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 1212 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 2293 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 5123 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 1693 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 1453 หลายเดือนก่อน
Translating microbiology of infections into genetics of immunology: 2024 PI Conference
Dermatology issues in the PI patient: 2024 PI Conference
มุมมอง 2113 หลายเดือนก่อน
Dermatology issues in the PI patient: 2024 PI Conference
Gene editing for X-linked agammaglobulinemia (XLA): 2024 PI Conference
มุมมอง 3213 หลายเดือนก่อน
Gene editing for X-linked agammaglobulinemia (XLA): 2024 PI Conference
The role of AI in the future of PI: 2024 PI Conference
มุมมอง 763 หลายเดือนก่อน
The role of AI in the future of PI: 2024 PI Conference
Meet the researchers: Clinical trials update: 2024 PI Conference
มุมมอง 873 หลายเดือนก่อน
Meet the researchers: Clinical trials update: 2024 PI Conference
Meet the stars of Compromised: Life Without Immunity
มุมมอง 7493 หลายเดือนก่อน
Meet the stars of Compromised: Life Without Immunity
Legislative initiatives breakfast: 2024 PI Conference
มุมมอง 473 หลายเดือนก่อน
Legislative initiatives breakfast: 2024 PI Conference
Severe combined immunodeficiency (SCID) overview: 2024 PI Conference
มุมมอง 2173 หลายเดือนก่อน
Gain an understanding of symptoms, criteria for diagnosis and available treatment options for Severe Combined Immune Deficiency (SCID). Also learn tips and resources for managing a SCID diagnosis.
Opening session: 2024 PI Conference
มุมมอง 3023 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 1833 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 1663 หลายเดือนก่อน
The elephant in the exam room: what your doctors wish you knew: 2024 PI Conference
PI & respiratory health: 2024 PI Conference
มุมมอง 1113 หลายเดือนก่อน
PI & respiratory health: 2024 PI Conference
Common variable immune deficiency (CVID): Conversation with an expert: 2024 PI Conference
มุมมอง 7133 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 263 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 433 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 983 หลายเดือนก่อน
Emerging diagnostics & therapies for chronic granulomatous disease (CGD): 2024 PI Conference
Managing food allergies with PI: 2024 PI Conference
มุมมอง 763 หลายเดือนก่อน
Managing food allergies with PI: 2024 PI Conference
The future is now: preparing for transition to adult care: 2024 PI Conference
มุมมอง 303 หลายเดือนก่อน
The future is now: preparing for transition to adult care: 2024 PI Conference
Emerging immunotherapies for PI: 2024 PI Conference
มุมมอง 643 หลายเดือนก่อน
Emerging immunotherapies for PI: 2024 PI Conference

ความคิดเห็น

  • @TotalRhythm
    @TotalRhythm วันที่ผ่านมา

    That’s sad

  • @Doyle-n4z
    @Doyle-n4z 2 วันที่ผ่านมา

    Hello

  • @Doyle-n4z
    @Doyle-n4z 2 วันที่ผ่านมา

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

  • @garyhogue2367
    @garyhogue2367 2 วันที่ผ่านมา

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

  • @wendymcdonald5145
    @wendymcdonald5145 2 วันที่ผ่านมา

    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 11 วันที่ผ่านมา

    Any autoimmune disease that you developed ?

  • @il3mendo
    @il3mendo 12 วันที่ผ่านมา

    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 12 วันที่ผ่านมา

    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 13 วันที่ผ่านมา

    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 13 วันที่ผ่านมา

    Excellent talk, thank you Dr Sullivan!

  • @radhika__2146
    @radhika__2146 14 วันที่ผ่านมา

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

  • @TheHyperMD
    @TheHyperMD 29 วันที่ผ่านมา

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

  • @lauraseiden5006
    @lauraseiden5006 หลายเดือนก่อน

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

  • @MusicmatchJukebox
    @MusicmatchJukebox หลายเดือนก่อน

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

  • @DarkKnightofIT
    @DarkKnightofIT หลายเดือนก่อน

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

  • @ProfessionalWidow291
    @ProfessionalWidow291 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 หลายเดือนก่อน

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

  • @cv21a
    @cv21a หลายเดือนก่อน

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

  • @RkiyaTouil
    @RkiyaTouil หลายเดือนก่อน

    Plz

  • @Aging_Casually_Late_Gamer
    @Aging_Casually_Late_Gamer หลายเดือนก่อน

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

  • @RkiyaTouil
    @RkiyaTouil 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 หลายเดือนก่อน

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

  • @BJ_Freeplay
    @BJ_Freeplay 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

  • @KeenedakbeKebabs-f9l
    @KeenedakbeKebabs-f9l หลายเดือนก่อน

    Herman Oval

  • @lynnwong5854
    @lynnwong5854 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 หลายเดือนก่อน

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

  • @bloodydjehuty
    @bloodydjehuty 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 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 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 หลายเดือนก่อน

    Thankyou for this.

  • @TedChristine-x9y
    @TedChristine-x9y หลายเดือนก่อน

    Schumm Pike

  • @Nyx9533
    @Nyx9533 หลายเดือนก่อน

    I can't This song is way too sad 😭

  • @andymartin6084
    @andymartin6084 หลายเดือนก่อน

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

  • @putsticker
    @putsticker 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 หลายเดือนก่อน

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

  • @MaxineJulianaMolina
    @MaxineJulianaMolina หลายเดือนก่อน

    IM SOBBINGG WHAT

  • @zeralf
    @zeralf หลายเดือนก่อน

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

  • @joshuaperez1999
    @joshuaperez1999 หลายเดือนก่อน

    NOW MOST TO STREAMER ON TWITCH

  • @anjalib8912
    @anjalib8912 หลายเดือนก่อน

    The only IDF i will ever support. Thank you for helping my Oshi

  • @pineablesoda
    @pineablesoda หลายเดือนก่อน

    Amazing process, why is this not a go-to for PI? obviously only if the patient is suitable enough and if they can afford to do it. Is the rate of success very low?

  • @smarouchoc7300
    @smarouchoc7300 2 หลายเดือนก่อน

    Ok. Opera singer was not on the bingo card. Singing is an important part of who I am. I imagine it's the same for Ironmouse. Losing something she trained so hard for - that's no joke. What she has done after speaks to a remarkable determination that not everyone has. Mad, mad props.

  • @armonddai8182
    @armonddai8182 2 หลายเดือนก่อน

    I was just diagnosed with SAD. This video helped me answer a lot of questions. Thank you

  • @donnagunn8632
    @donnagunn8632 2 หลายเดือนก่อน

    Being on prednisone for a year caused my husband to develop cataracts.

  • @WarnerZebulon-f9k
    @WarnerZebulon-f9k 2 หลายเดือนก่อน

    Chelsea Knoll

  • @fryfry377
    @fryfry377 2 หลายเดือนก่อน

    She is successful despite her sickness and because of her strength and compassion.

  • @GeneralLiuofBoston1911
    @GeneralLiuofBoston1911 2 หลายเดือนก่อน

    If it wasn't for Covid, I wouldn't have known about immunity deficiencies beyond things like asthma or other things considered "common" long term sicknesses. If it wasn't for Ironmouse, I would have never understood how immune deficiencies actually affect people and have become more aware about people's needs. I am glad that Ironmouse was able to find a path in life and that I found her. ❤

  • @il3mendo
    @il3mendo 2 หลายเดือนก่อน

    Acetone at the age of 4.lactose intollerance at the age of 6 then many food allergies such eggs, corn, soya, rice and many others. Found out that I had seronegative celiac disease with total atrophy and autoimmune gastritis.

  • @emilyh3644
    @emilyh3644 2 หลายเดือนก่อน

    I am so touched by your story. I am a medical student who is studying immune system diseases right now. Learning from the patient perspective reminds me why I am working so hard to understand the science and treatments. Sending love and support. <3

  • @richardsmith5973
    @richardsmith5973 2 หลายเดือนก่อน

    I'm happy for recommend *DOC UROMI* on TH-cam to everyone, as he cure my STD.🙌🙌🙌🙌

  • @richardsmith5973
    @richardsmith5973 2 หลายเดือนก่อน

    I'm happy for recommend *DOC UROMI* on TH-cam to everyone, as he cure my STD.🙌🙌🙌🙌

  • @richardsmith5973
    @richardsmith5973 2 หลายเดือนก่อน

    I'm happy for recommend *DOC UROMI* on TH-cam to everyone, as he cure my STD.🙌🙌🙌🙌

  • @richardsmith5973
    @richardsmith5973 2 หลายเดือนก่อน

    I'm happy for recommend *DOC UROMI* on TH-cam to everyone, as he cure my STD.🙌🙌🙌🙌