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joannacats
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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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tammyb
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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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Blueswoman
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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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MOMOFPEAC111
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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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bree5l
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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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kimberly
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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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MomtoBlake14
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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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terragreentree
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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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homenurse10
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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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sherryr
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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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LClcoombs@ptd.n
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-- 10-19-2007 @ 4:21 AM
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When I emailed someone from the Jeffrey Modell Foundation here (on the left menu bar Contact Us) I was given a great online support group at Yahoo for PID and CVID patients. Here's the link
http://health.groups.yahoo.com/group/PIDsupport/ to request membership....hope to talk to you all on line. It's a great group....tons of information AND best of all you will never feel alone again with your illness. LC
This message was updated on 10-19-07 @ 9:39 AM
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timordog
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-- 12-02-2007 @ 9:31 AM
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Hi, I have horrible neck pain, fatigue, and depression. I am constantly getting sick too- I'm IGg subclass deficient. I hope to be starting Vivaglobin at home soon. I've been researching and there are ties with low IGg levels and pain, chronic fatigue,and fibromyalgia. I've found this after months of researching. Gosh, I'm sorry you are having side effects, but I would think the subcut. is a lot more tolerable than getting an Iv w/ a large volume, you know? I'd love to talk with you.
triciawalther@sbcglobal.net
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homenurse10
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-- 12-03-2007 @ 4:36 PM
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The best on-line support group I've found is on Yahoo under PID-Primary immune deficiencies. It's given me a lot of info and some great people to talk to.
We have all ages (I'm 35), parents and patients.
I've learned a lot about sub q, esp. Vivaglobulin I do IVIG but there are a lot more options out there than I realized.
Jennifer www.homenurse10@yahoo.com
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bibi
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-- 12-10-2007 @ 9:36 PM
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I was diagnost in 04, when my insurance stop paying for my Hospitals IV my doctor suggested to do sub q, mow for a year, I have lots of question, in the begining o.k.but I have ben getting infections since May every 3 month, with the Hospital IVI only got sick once a year. I am 60 and will love to chat with other older people about this sikness
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Janie
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-- 09-06-2008 @ 11:32 PM
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My name is Janie. I'm a 49 y/o with Primary Immunodeficiency Disease. I just put in a post if you'd like to read it.
I am deficient in IgG-3 and Mannin-Binding Lectin or MBL's which active the complement portion of your immune system. I also do not retain antibodies from vaccines given to me. I keep getting more profoundly fatigued - increasing severely over the last year and a half. I'm also on the low-normal side of IgG1's and IgG4's.
I'm going the end of this month for an evaluation at Mayo Clinic's Primary Immunodeficiency Clinic prior to beginning the IgG Therapy.
I am worried about the treatments, I keep developing new allergies at an accelerated rate for the last 3-5 years. Usually, if there's an odd chance of reaction to something, I end up with it..
I would love to be able to talk with someone else who is coping with the same issues.
We shouldn't all have to reinvent the same wheel.
Janie
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ktweddle
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-- 01-07-2009 @ 10:51 AM
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Hello!! I am from Coventry, RI and would love to talk with you. I have been suffering with these symptoms for some time and was not diagnosed till recently. Please contact me if you can.
ktweddle@cox.net
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Suz1229
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-- 01-27-2010 @ 1:45 AM
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I was just diagnosed with hypogammaglobulinemia 6 months ago at age 61. I am now 62 and undergoing IVIG every four weeks. Tomorrow will be my 4th treatment. Just starting to notice less congestion upon waking in A.M. How long did it take for everyone to notice improvements? I'm wondering if I'm expecting too much of the IVIG. Having been ill ALL of my life since infancy, it was quite a relief to be diagnosed with a real disorder. Did anyone else suffer family members thinking you were being a "drama queen," exaggerating how lousy you felt, losing friends because they stopped calling since you were always ill, losing husbands because you didn't feel like doing things. I need someone to talk to and I feel so alone, because I've been on disability from other health problems since 1999 and have no close friends anymore, don't go to church (I always got sick afterwards) and have isolated myself. Thanks for your help. This is my first time on here. SuzC  Suz122947@Verizon.Net
This message was updated on 1-28-10 @ 1:09 AM
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biagina
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-- 01-29-2010 @ 8:39 AM
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Hello Sue
Welcome to this site. This is a great site- be sureto check outtheir posters on how to diagnose the disease and whattests you should have had.
As an adult with PIDD, you might like to go to www.primaryimmune.org and sign in. You can find a support person- adult in your state. I am 63 and a support person in my state.
I was diagnosed with IGG#3 deficiency at age 57 after unsuccesful sinus surgery.
Yes, we have all gone through all that you have.
Losing jobs we loved; having people say "Are you sick again?"
I will email you also with some support info.
Betty
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