Living with CVID in hawaii

  1. profile image48
    hulamauiposted 9 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. profile image52
      markinclevelandposted 9 years agoin 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 image58
    chimmychanposted 9 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!


This website uses cookies

As a user in the EEA, your approval is needed on a few things. To provide a better website experience, uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at:

Show Details
HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
LoginThis is necessary to sign in to the HubPages Service.
Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
AkismetThis is used to detect comment spam. (Privacy Policy)
HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the or domains, for performance and efficiency reasons. (Privacy Policy)
Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
MavenThis supports the Maven widget and search functionality. (Privacy Policy)
Google AdSenseThis is an ad network. (Privacy Policy)
Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
Index ExchangeThis is an ad network. (Privacy Policy)
SovrnThis is an ad network. (Privacy Policy)
Facebook AdsThis is an ad network. (Privacy Policy)
Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
AppNexusThis is an ad network. (Privacy Policy)
OpenxThis is an ad network. (Privacy Policy)
Rubicon ProjectThis is an ad network. (Privacy Policy)
TripleLiftThis is an ad network. (Privacy Policy)
Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)