Living with CVID in hawaii

  1. 62
    hulamauiposted 6 years ago

    This year it'll be 20 years of living with cvid.  this condition is similiar to that of the boy in the bubble syndrome.  I was pretty born without an immune system that leaves me open to any and all infections.  I myself live for the day, the reason writing this is to let those out there wth similiar condtions know that life is to short to hide behind your illness.  My body one day will be defeated by an infection of som sort but I am not afraid, I was recently diagnosed with cancer another great attribute to cvid but life goes on.  anyone out there who gets reccurent infections, or the doctors just cant figure it out have them check your immunoglobulin levels.  I am 1 in a 100,000 but according to facts many more people are out there with the same condition they just dont know it.  When you go to Dr.s office dont go unprepare, tke your questions, be aggresiv its your body, do the researchwith the hundreds of people theysee until they see you again they could really give a shit.  anyways i hope his reache someone who may need it.  god bless and have a great year

    1. 59
      markinclevelandposted 6 years ago in reply to this

      I too have CVID and was diagnosed over 30 years ago. I think you may have some miss-information about your illness.

      The odds are you will not die from an infection exacerbated by your CVID. If you get your infusions of IViG you have an almost normal life expectancy.

      CVID is not the boy in the bubble illness. That is SCID, Severer Combined Immune Deficiency, a much more serious condition. SCIDs babies generally dies unless they have bone marrow transplants within the first months of life.

      You were not born without an immune system. Parts of your immune system function perfectly well. You do have a significant challenge to fight bacterial infections and generally vaccines are not effective.

      Again, you can probably live a very normal life if you get your infusions and aggressively treat any infections.

      Good luck

  2. chimmychan profile image59
    chimmychanposted 6 years ago

    Good thoughts you have.I am sure lots will learn and be able to feel for those who have suffered from cvid.Keep going!