Battling Fatigue -- 2022 PI Conference

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  • Опубликовано: 25 ноя 2024

Комментарии • 8

  • @dcantwell119
    @dcantwell119 Год назад +2

    Thank you for this wonderful presentation. As a patient this is an under addressed problem that does affect our quality of life. 😢I live in a metro area with over 1 mil people and my doctors say there are not really any immunologists around.

    • @JeanEDeaux
      @JeanEDeaux Год назад

      I live in Houston and have to see an oncologist.
      When I was much, much younger(~12), I saw an immunologist and later, an allergist. I’m 45 now seeing an oncologist for my IVIG.

    • @54mtjohnson
      @54mtjohnson 6 месяцев назад +1

      I see a hematologist/oncologist he's great

    • @elizabethhamel8478
      @elizabethhamel8478 4 месяца назад

      @@JeanEDeaux Dr. Hajjar is in Houston, and sees adults. If she has your insurance you could see her. There is another good immunologist, I see him and he's good. Maybe one other one.

    • @JeanEDeaux
      @JeanEDeaux 4 месяца назад

      @@elizabethhamel8478 I’m on medicaid. It’s pretty rough finding those doctors with availability for new patients.

    • @JeanEDeaux
      @JeanEDeaux 4 месяца назад

      @@elizabethhamel8478 I’ll definitely check thought. Thank you for the info.

  • @Butterfly-zs2pc
    @Butterfly-zs2pc 2 года назад +2

    Where I live you are lucky to have a doctor and they are not well versed on CVID. They treat me as though anything I have going on is of no consequence and rebook me for follow up in a year or 6 mos. It is hopeless and disheartening!

    • @kayeemerson6892
      @kayeemerson6892 Год назад

      I just heard IDF say this Everyone is allowed 1 pneumonia, 2 you're on my radar and 3 pneumonia you're on your way to an immunologist. I had pneumonia 6-8 times and finally asked my PCP 2 check my immune system which he ignored and I was accidentally diagnosed by going to an allergist, I bared my soul to him. He handed me a phamlet on sub q weekly and about 3 pages of blood test. I was diagnosed with hypogammaglobulinemia and have been doing subq in my home IgG for 4 years without having pneumonia again but the infections just moved to my GI & urinary tract. I have been taken from my home barely conscious with sepsis twice. Now I'm battling Ecoli in my GI tract. I believe that I was born with this and by the time of diagnosis the damage was done. I still do my IgG treatments weekly. I am elderly live alone in a rural area without access to the doctors I need to see.