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Discussion Topic: Any Online support groups for patients
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05-20-2005 @ 1:15 AM
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Does anyone know of any online adult support groups? I'm 33 & have hypogammaglobulinemia & hypocomplimentcemia.. I would love to talk to other patients in my age group..
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05-21-2005 @ 3:01 AM
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I don't know of any support groups, but I was wondering if you could share your experiences? I have a 2 year old daughter with the same diagnosis as you and we are wondering what to expect for her, what her life will be like. She was just diagnosed with the hypocomplimentcemia yesterday, and the hypogammabglobulinemia a year ago. My email is tebritter@hotmail.com. Any information you felt like sharing would be helpful. Thanks, and best of luck to you.
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08-20-2005 @ 10:50 AM
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I just joined this message board and saw your message. I am an adult 45 yrs. old and was diagnosed with CVID-hypogammaglobulinemia 5 years ago. I realize you wrote this message in May. If you are still out there and checking up to see if anyone has responded to your message feel free to contact me at:bflatblueswoman@hotmail.com.
Signed:
Blueswoman_Su
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03-10-2006 @ 7:08 PM
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I too have been diagnosed for about 1 year now and would like to chat with anyone with same igg deficiency. lots of wondering and questions. i have infusions once a month with many different side effects and would like to discuss with a person with the same. have children grown all with health related problems, very worried about children going through the same.
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07-08-2006 @ 10:42 PM
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I was just diagnosed with the same thing. Ive been so ill so I understand how you feel. It makes for a lonely life when you have no one who can relate to you...I am 37 and pls feel free to respond..I would love to chat.
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07-12-2006 @ 2:39 PM
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My son is 14 and has low igg 1 and igg 3. We are seeing an infections disease Dr. at a children hospital. But I am still really confused on all this. Can some one tell any thing about this. Kimberly
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07-17-2006 @ 2:30 PM
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Hi Kimberly
My son is 14 & was DX at age 3 with Hypogammaglobulemia & Hypocomplimentemia. He was sent to Duke at age 7 & they comfirmed that Blake has CVID with CompleteT-Cell Dysfunction. If you would like to chat off line, my e-mail is: momtoboywholoveshisgoats@yahoo.com I am interested in chatting with someone who has a child the same age as my son with simular issues!! Thanks,
Julie
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09-20-2006 @ 11:31 AM
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Greetings. My name is Terri and I had a gastric bypass in 1998. I believe that my hypogammaglobulinemia was brought on by this surgery. I do not have any of the classic signs of HGGE, as in respritory problems, sinus infections, ear infections, etc... It just showed up in some blood work I had a month ago. I am hoping that by using mass doses of vitamins and supplements that I will be able to overcome my HGGE. I think I have be in a state of malnutrition for the past 8 years since losing 160 pounds and that may have lead to this HGGE problem I am having. Does anyone have any ideas on which vitamins/supplements might work to combat this diagnosis? email me at terragreentree@yahoo.com
Thanks and take good care,
Terri from Eugene, Oregon
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09-26-2006 @ 11:13 PM
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Guess we have to start our own support group!! I am a 34 yr old female with hypogammaglobulinemia-had it since I was born but just dx 6yrs ago. I never had the respiratory problems but always ears, sinus, and gastric problems. Would love to exchange stories and info with anyone interested. Maybe we could get an e-mail list together. Write if interested...homenurse10@yahoo.com.
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10-18-2007 @ 1:55 PM
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I am a 35 year old female, that finally got diagnosed about 4 months ago with P.I. I am currently taking subq Vevaglobin infusions weekly at home. They seem to be working, but I feel like I have more side effects then I should have. Is anyone else out there familiar with this med? I would love to talk to someone who can relate to my illness, costant joint pain, fatigue, etc. I sometimes wonder if just because I look ''normal'' people don't take my illness seriously, does anyone else feel this way? Would love some feedback.
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