I was diagnosed with Brutons at a very young age approx 4 or 5 i believe
i am now 22 so i have been living with a primary immune deficiency for a long
time now. I get treatments once a month thru IV infusions of IVIG *intervenous Immunoglobin*. I for the most part feel health, on occasion i am tired usually between
treatments like the middle two weeks. i almost always have a sinus infection :-P
but i can live with that. So other than that I am pretty healthy once in awhile i catch
Bronchitis or pneumonia but for the most part the IVIG and some antibiotics keep me
healthy. I live a pretty normal life style well excepty that i am on disability i have been
on it for about 1 1/2 years now.

But its not so bad i find things to do to keep myself buisy and somewhat active.
Mostly i play with my computer . I would be willing to answer questions if i can and i
hope that my sharing of my life has helped others who will read this.

P.S. Remember there is always hope.

Sincerely,
J

Hi, J!
I was diagnosed with Common Variable Immunodeficiency on 5-9-03, and I start my IVIG tomorrow, 5-14-03. I have not had any infections in the last year, except infected stitches, and some minor colds. My IgG, IgM, and IgA are all undetectable at current, as well as my immunizations. But, I am positive I will be OK. I just need some kind words and support from those around me. I am confident I will be OK.
lisa

Dear J
i have had cvid for 17 years now and i just applied for disabilty a year ago and was turned down 2 times. can you tell me how long it took you and if there is anything else i need to do.
thank you
Lj

J,
I am also 22. I'm pretty sure I've had hypogamma since I was 7. Although I didn't know it untill I ended up in the hospital for a 2 week stay at age 17. I had had 3 operations by then: a tonsilectomy, a pilinidal cyst removal, and clusters of lipoma tumors removed (which have undoubtably returned). I have went without my infusions for 2 years. I can't stand the way some doctors have treated me. Earlier detection might have changed my opinion. I don't like being sick all the time and there isn't anyone my age around town that has to be connected to a machine for 4 hours every month to stay healthy. I can admit that I am INSANELEY JELOUS of the rest of my generation that go unmarked by this apalling lifestyle. I haven't had a PC in years so have missed out on this amazing IPOPI opportunity. It sucks to know I'll be at the cancer center soon enough if I can't boost my own immune system by myself. I am good at coping around outsiders, but I'm tired of being tired and alone. I don't think I can fake this smile anymore. It used to be SOOO different. I went undiagnosed for so long without anyone (including my family doctor, who I saw more then my classmates)realizing there was a serious problem, that I am having a hard time trusting my ears. I have spent way to many days at the ER lately with an array of problems. Antibiotics aren't the answer and I know I'm immune to them again. Please help me find my courage again!
Sarah

well..
I am happy to see that so many of you have replied to my post.
I am now 25 years old and have been very sick this year; I have been on azithromyacin 3 times, cipro once, and biaxin XL now I am starting augmentin 875mg twice daily. So I cant really say that you will not struggle if you have a PID variant. The important thing to remember is that you will get sick so take care of your body. Also if you feel depressed or know that you are get help, depression is a common thing for people that are sick often.

If you are on disability or find that you cannot work get out of the house or find a hobby, something anything to keep yourself buisy as exercise even just walking or doing something with your hands will help keep you healthy.

I have been attending college and am only 7 credits away from achieven an associates in computer science. So some of the best advice I can give you would be if you want to do something do it, dont wait for tomorrow. Im not saying go out and run in the rain if you are sick, that is just silly. If you are ill get off your ass get to a doctor and get help. Remember you arent radically different from other people, you will just get sick if you do not take care of yourself.

If you do not have an immunologist I highly recommend finding one, most allergy/ashtma specialists also work with immunology. If you do not have medicaid or medicare(disability) get down to the FIA or DHS or whatever your state calls it and sign up.

Remember education is the key, stay on top of your illness; stay educated with new treatments and how your current treatments are doing.

ps. I will try to keep in touch on this forum or email me jaypenix(at)comcast.net. PEACE

Hi i have the same thing its been 4 years

Hello I hope that you can tell me how this is going to affect my 22 year old daughter? We just found out 2/7/07 that she has cidp and needs to have a spinal tap, and the immuneoglubin transfusions plus pt and ot She is very weak and tierd and has 3 small children at home to care for. I am willing to do all that I can for her. Does this progress fast she has had symptoms since 8/06 been on predisone 20mgx2 aday and now down to 20mg 1x aday I have tried reading all that I can but havn't found alot of answers Does this mean she is going to be acceptable to more? will she develop other problems. Sorry but shes my baby and its hard and I am just looking for all the info I can get. Thanks please reply

Hi ya J! My name is laura and I am currently 16 years of age. I only found out that I had brutons desise this year. I have been ill nearly all my life but in the past year it has got much worse as I have had two pneumonia's. I am always really tired so I find it really hard to go out to night clubs and discos. I feel alienated. How do you manage to cpe with it. Pleeeeeeeeeez reply. Laura Bishell