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Canadian Immunodeficiencies Patient Organization Organisation Canadienne Des Personnes Immunodéficientes |
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| Name/Nom: | trudeau johanne |
| E-mail address/Adresse de E-mail : | johannetrudeau@hotmail.com |
| Homepage URL/URL De Homepage : | http://johannetrudeau@hotmail.com |
| Comments/Commentaires: bonjour et félicitations pour votre site.Je me pose certaines question, et peut-etre que d autres parents se les posent aussi. Alors voici en résumé, ma fille recois des gamma-globulines deouis 4 ans mais a chaque fois que je vais a l hopital une autre chose se rajoute, exemple, des nodules se sont développées sur les poumons,anémie etc... je me demande si ce sont les gamma qui peuvent faire ca a long terme. Alors si quelquun connait la réponse m envoyer un email svp merci a l avance. maman de ganevieve | |
| Name/Nom: | Tess Padilla |
| E-mail address/Adresse de E-mail : | tess_1014@yahoo.ca |
| Name/Nom: | Tina Mackell |
| E-mail address/Adresse de E-mail : | eric_n_tina@rogers.com |
| Comments/Commentaires: Hello/Bonjour,
I am also an IGA & Igg deficient patient and have had a life long struggle with this dificiency. I was diagnosed at the age of 5. I am now 26 and happy to report that I am doing much better than I was at childhood or during my teenage years. That being said, and even if I don't show it in front of most people, this dificiency still remains to be quite the challenge. I still experience a lot of fatigue/weakness, less frequent infection however, when I do get sick, it can last anywhere between 3 to 8 weeks...sometimes even longer. Typical for an IGA & Igg deficient patient. I took IVG treatments from the age of 12 to 14. Unfortunetly, I have had serious reactions to IVG treatments and am no longer able to take them. Although my levels remain quite low, I am still able to lead a rather normal life. I came across this Website through a wonderful lady I met at CHEO. Stories like hers and yours inspire me and make me grateful to wake up every morning to take on a new day! To those of you who face challenges with immuno diseases, keep your chin up and keep fighting! Better days ahead! Tina Mackell |
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| Name/Nom: | Cathy Giroux |
| E-mail address/Adresse de E-mail : | cathy433@hotmail.com |
| Comments/Commentaires: Hi, my sister Tina, 49 yrs old has been suffering for 3 years with symptoms that have now been diagnoised as "Job's Syndrome" If anyone can provide ANY info on ANYTHING, it would be great. Currently she's receiving light therapy for the skin infections but emtionally she's starting to break down.
Thanks Cathy Toronto, ONtario |
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| Name/Nom: | Jean-Paul Lussier |
| E-mail address/Adresse de E-mail : | jplussier@maskatel.net |
| Comments/Commentaires: Je souffre d'angioédème héréditaire. Comme vous le savez, c'est une maladie rare qui est peu et mal connue et très rarement diagnostiquée. Si vous en souffrez ou vous connaissez quelqu'un qui en est atteint, SVP faites-moi parvenir vos coordonnées, surtout si vous résidez au Québec pour que nous puissions former une masse critique de patients plus importante. MERCI | |
| Name/Nom: | Colette leroux |
| E-mail address/Adresse de E-mail : | maroie@hotmail.com |
| Comments/Commentaires: Je suis atteinte de PID et je recois des traitements depuis plus de 25 ans.
Pour l instant je recois du gammagard a tous les mois. j aimerais connaitre la facon de devenir membre de votre association et aussi assister a la conference du mois de septembre a Quebec. |
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| Name/Nom: | Shelly.Bezenar |
| E-mail address/Adresse de E-mail : | Bezenar@telus.net; Shelly.Bezenar@gov.ab.ca |
| Comments/Commentaires: Great to know there is an organization, as well as Provincial Chapters, for information and support for patients.
Thank you |
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| Name/Nom: | Darrell Payne |
| Comments/Commentaires: My 6 year old son has just been newly diagnoised after a 7 week stay in the IWK Childrens Health Center in Halifax, NS with a very serious common ottis media causing a mastoidtitis, Venal Thrombosis (stroke), and brian absess. After next to a non-existent body response to the infection he has been diagnoised with Hypogammaglobulinemia (CVID) and we are looking to make a contact with other Atlantic Canadian patients and parents of the IWK Immunology program.
As all here can understand, we are very concerned and fearful of the future, with the planned IVIG treatments, continuos antiboditic and unknown. |
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| Name/Nom: | Serge Mailloux |
| E-mail address/Adresse de E-mail : | serge@fondationamandadigeorge.org |
| Homepage URL/URL De Homepage : | http://www.fondationamandadigeorge.org |
| Comments/Commentaires: trais bon site
nous notre petite fille amanda a le syndrome du digeorge a 4 mois elle sais fais opérer au coeur et elle a recu une greffe du thymus premiere greffer au quebec faut ce batre en semble lacher pas |
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| Name/Nom: | Angelica Kaschubowski |
| E-mail address/Adresse de E-mail : | u_kitty@hotmail.com |
| Comments/Commentaires: I really do not have a comment at this time as I just started to browse this web site. | |
| Name/Nom: | Helen Coish |
| E-mail address/Adresse de E-mail : | hcoish@shaw.ca |
| Comments/Commentaires: I have been receiving infusions for the past few years. | |
| Name/Nom: | trudeau johanne |
| E-mail address/Adresse de E-mail : | johannetrudeau@hotmail.com |
| Name/Nom: | Nancy Fradette |
| E-mail address/Adresse de E-mail : | nancyfancy13@hotmail.com |
| Comments/Commentaires: Bonjour à vous tous!
Je tiens d'abord à féliciter les gens qui ont mis du temps pour la réalisation de ce site. En ce qui me concerne, je suis une jeune femme de 37 ans qui a reçu un diagnostic de déficit immunitaire le 31 octobre dernier (immunodéficience commune variable). Jusqu'à présent, j'ai reçu 5 traitements de Gammunex au CHUL. Depuis, je n'ai pratiquement pas été malade ce qui est très différent de toutes ces années passées et surtout de l'année dernière où ma santé se détériorait grandement. Je suis très heureuse de mon nouvel état et des bienfaits ressentis. Aussi, ce qui est particulier dans mon cas, c'est que ma soeur et l'un de mes frères reçoivent les mêmes transfusions que moi depuis quelques mois. Je suis donc intéressée à recevoir toute l'information qui pourrait me permettre à moi ainsi qu'à ma famille de vivre pleinement cette deuxième vie! Merci à tous et au plaisir de vous rencontrer à la réunion de l'an prochain! |
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| Name/Nom: | Nancy Fradette |
| E-mail address/Adresse de E-mail : | nancyfancy13@hotmail.com |
| Comments/Commentaires: Bonjour à vous tous!
Je tiens d'abord à féliciter les gens qui ont mis du temps pour la réalisation de ce site. En ce qui me concerne, je suis une jeune femme de 37 ans qui a reçu un diagnostic de déficit immunitaire le 31 octobre dernier (immunodéficience commune variable). Jusqu'à présent, j'ai reçu 5 traitements de Gammunex au CHUL. Depuis, je n'ai pratiquement pas été malade ce qui est très différent de toutes ces années passées et surtout de l'année dernière où ma santé se détériorait grandement. Je suis très heureuse de mon nouvel état et des bienfaits ressentis. Aussi, ce qui est particulier dans mon cas, c'est que ma soeur et l'un de mes frères reçoivent les mêmes transfusions que moi depuis quelques mois. Je suis donc intéressée à recevoir toute l'information qui pourrait me permettre à moi ainsi qu'à ma famille de vivre pleinement cette deuxième vie! Merci à tous et au plaisir de vous rencontrer à la réunion de l'an prochain! |
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| Name/Nom: | Kristine |
| E-mail address/Adresse de E-mail : | kookygirl@mac.com |
| Comments/Commentaires: I've recently received a diagnosis of IGA deficiency. I'm interested in any information that you may have especially the autoimmune connection since I also have elevated ANA. I'm waiting for an appointment with an immunologist but was hoping to find out more before my meeting with him.
P.S. I also read that there is a support group in Vancouver, Could you please give me the details if this is still offered. Thank you for being here, K |
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| Name/Nom: | VERA |
| E-mail address/Adresse de E-mail : | vrp@sympatico.ca |
| Name/Nom: | Julie Lortie |
| E-mail address/Adresse de E-mail : | lamarocaine76@hotmail.com |
| Comments/Commentaires: Bonjour,
Je m'appelle Julie Lortie. J'ai un déficit immunitaire depuis janvier 2000. Je reçois 20 grammes de gammunex intraveineuse au 4 semaines. Mon médecin soignant est Dr Benoit Laramée. Je suis traitée à l'hopital CHUM de Notre-Dame à Montréal. Mon mari voyage beaucoup pour son travail. J'ai la chance de le suivre depuis quelques années maintenant. De 2005 à fevrier 2007, nous avons habité au Maroc. Je me suis bien débrouillée et j'ai trouvé des gamma importés de France. En février 2007, je suis revenue à Montréal et j'ai recommencé ma routine avec le CHUM. Maintenant, je suis à Pékin jusqu'au 12 juin. Je recherche activement des gamma mais c'est beaucoup plus compliqué vu la barrière du langage. Je vous demande si par hasard, vous n'auriez pas un contact ici ? Merci beaucoup pour votre aide ! Bien à vous, Julie Lortie I'm Canadian, I'm living in beijing (China) until june 2007). I'm searching for gamma cause i need it every 4 weeks. Can you help me ? Thank you for your support. This is a great site. I don't feel like i'm a alien :-) |
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| Name/Nom: | Liette Loiselle |
| E-mail address/Adresse de E-mail : | franklykly@hotmail.com |
| Comments/Commentaires: Félicitation pour votre site. Je viens tout juste d'apprendre l'existence de ce site à force de faire de la recherche. Je suis atteinte d’une immunodéficience depuis toujours.À l'époque les spécialistes n'avaient vu aucun cas comme le mien. J'étais la première au Québec. Ce n'est plus le cas aujourd'hui. J’ai des traitements depuis bientôt 34 ans. Depuis environ 10 ans mes traitements sont au deux semaines. Toute ma vie fût un combat continuel. Depuis un an, je ne travaille plus. Et …les infections sont maintenant presque nulles. Aujourd’hui, je peux dire que les traitements sont vraiment efficaces. Je fais ma part en allant moins dans des endroits infectieux. Je sais maintenant qu’à mon réveil je fais faire une journée agréable. J'ai réalisé qu'un petit stress affaibli mon système. Je crois que c'est le premier élément à illiminer pour nous. Au plaisir de communiquer avec tous et chacun. | |
| Name/Nom: | Blair McGeough |
| E-mail address/Adresse de E-mail : | blairmcgeough@yahoo.com |
| Name/Nom: | Linda Molloy |
| E-mail address/Adresse de E-mail : | lindamolloy@nl.rogers.com |
| Comments/Commentaires: Hi I was diagnosed at age 12 with CVID I did not know that was the name of it. I new I had low IGG and IGA. I started out getting Im injections until age 16 when I started getting monthly IVIG. I am presently 37 yrs old and continue to get it monthly. I have been good up until the past two years I have been getting more chest infections. I was wondering if there is anyone out there with the same problems. I need antibiotics about every three months and I really would like to know the best thing to do. I don't want to be taking the heavy duty antibiotics that often or I will become resistant. Can anyone give me some advice. | |
| Name/Nom: | Helen Coish |
| E-mail address/Adresse de E-mail : | hcoish@shaw.ca |
| Comments/Commentaires: I was diagnosed with PID a few years ago, and have been receiving IVIG every 3 weeks for the past 3 years. | |
| Name/Nom: | Pierre Rondeau |
| E-mail address/Adresse de E-mail : | p_rondeau@shaw.ca |
| Comments/Commentaires: I was told I could registed on this site somewhere but I can't find it, maybe you can help me. | |
| Name/Nom: | casey morgan |
| E-mail address/Adresse de E-mail : | nellyb57@hotmail.co.uk |
| Comments/Commentaires: i am 23 years of age. I live in Edinburgh Scotland. I have just been diagnosed with 1gG defiency.
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| Name/Nom: | vera |
| E-mail address/Adresse de E-mail : | vrp@sympatico.ca |
| Name/Nom: | Shari Darosa |
| E-mail address/Adresse de E-mail : | sdarosa@shaw.ca |
| Comments/Commentaires: I live in a small city in BC which doesnt appear to have any support groups or anything for people with hypogammaglobulinemia which is what i have. do you have any info on things like that? | |
| Name/Nom: | louise powers |
| E-mail address/Adresse de E-mail : | loupowers@hotmail.com |
| Comments/Commentaires: i would like to receive information about mixed connective tissue disease.i was recently diagnosed after suffering for over 17 years. | |
| Name/Nom: | Jackie Desrochers |
| E-mail address/Adresse de E-mail : | desrocher1@ns.sympatico.ca |
| Comments/Commentaires: Hi there,
Our daughter who will be 7 years old in May was diagnosed in December 2005 with CVID. She was very sick since the age of 2 with recurrent mastoiditis/otitis media/pneumonia/bronchitis/asthma/chronic diarrhea/fevers and severe allergies. She has had 5 surgeries, two being mastoidectomies. It took forever for the Doctors to diagnose her. She started IVIgG in January of 2006 every four weeks. Since the IVIgG we have noticed a remarkable improvement in her health. |
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| Name/Nom: | LENEPVEU |
| E-mail address/Adresse de E-mail : | piermari@infonie.fr |
| Comments/Commentaires: Bonjour, je suis l'amie de pierre atteint d'agammaglobulinémie il a 52 ans et soigné sur bordeaux.
si j'ecris ceci c'est pour temoigner et faire part de "l'espérance de vie" |
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| Name/Nom: | LENEPVEU |
| E-mail address/Adresse de E-mail : | piermari@infonie.fr |
| Comments/Commentaires: Bonjour, je suis l'amie de pierre atteint d'agammaglobulinémie il a 52 ans et soigné sur bordeaux.
si j'ecris ceci c'est pour temoigner et faire part de "l'espérance de vie" |
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| Name/Nom: | vera |
| E-mail address/Adresse de E-mail : | vrp@sympatico.ca |
| Comments/Commentaires: hi
i like to receive your newsletter and all events |
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| Name/Nom: | Cybil |
| E-mail address/Adresse de E-mail : | sibyllan@hotmail.com |
| Comments/Commentaires: Great site, keep up the good work! | |
| Name/Nom: | MaryAnne Crossett |
| E-mail address/Adresse de E-mail : | marmar1257@yahoo.com |
| Comments/Commentaires: I HAVE CVAD AND WOULD LIKE ANY INFO
THANKYOU |
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| Name/Nom: | Steven Durocher |
| E-mail address/Adresse de E-mail : | crystal.steven@hotmail.com |
| Comments/Commentaires: I have hypogammaglobulinemia and would like to know if IVIG is the only treatment for this because it is not working for me and I'm only 26 years old and would love to live a long life like everyone else.
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| Name/Nom: | René Forget |
| E-mail address/Adresse de E-mail : | reneforget@sympatico.qc.ca |
| Homepage URL/URL De Homepage : | http:// La famille Forget de Lourdes De Joliette |
| Comments/Commentaires: Merci pour tout ma maladie est moins grande quand je lis vos receuils. | |
| Name/Nom: | Martin |
| E-mail address/Adresse de E-mail : | mefy@axion.ca |
| Comments/Commentaires: question qui m'intrigue, je suis sous gamma globuline et je me suis déja échappé ce produit sur une main, c'est collant comme du sucre, 1' question il y en a t il dedans et si oui le diabétique lui comment il fait? Cela affecte-il son taux de sucre? Merci de me répondre et vous pouvez le faire directement par mon émail si vous le voulez Bye ! | |
| Name/Nom: | katy cote |
| E-mail address/Adresse de E-mail : | katou77774@hotmail.com |
| Comments/Commentaires: jai assister en fin de semaine a votre congret puisque mon petit garcon est attein du deficit immunitaire nous avons ete bien recu merci a tous | |
| Name/Nom: | Jill Savage |
| E-mail address/Adresse de E-mail : | gandjsav@mts.net |
| Name/Nom: | Josée Roy |
| E-mail address/Adresse de E-mail : | fam.masson@axion.ca |
| Comments/Commentaires: mon fils Dominique Masson 15 ans est atteint d'immuno déficence commune variable combiné avec une ostéomyélite multifocale chronique réccurente.suivi au Chus Fleurimont (Dre Chantale Lemire )et Ste Justine (Dr. Élie Haddad) | |
| Name/Nom: | Annie Marchand |
| E-mail address/Adresse de E-mail : | peln@premiertech.com |
| Name/Nom: | Lee |
| Comments/Commentaires: In 2005 I was diagnosed with CVID (IGG subclass 3). After one year of IV Therapy, I'm pleased to say, I'm healthier than ever. My only symptom was recurring pneumonia that began in my early 30s. I don't know what kind and I was never hospitalized. For 10 years I was told I had allergies or COPD or asthma, but I suspected something more as I had fevers. After three pneumonias in a year I was sent to a specialist. Is there anyone else out there with a similar history? | |
| Name/Nom: | Dawn |
| E-mail address/Adresse de E-mail : | bndmilton@shaw.ca |
| Comments/Commentaires: Hello again,
I had signed in awhile ago under a hotmail as we were in the process of moving,so that address is no longer working. We have 2 sons with CVID with some t-cell defects. Both boys require Iveegam to maintain their health. Even with continued treatments they develop infections.Our kids also both have Prolonged bleeding times due to unknown etiology. We are finding that our eldest son whom is almost 14 is having a rough time and doesn't always tell us how he is feeling due to not wanting to be different. Does anyone have any suggestions as to how to help? |
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| Name/Nom: | Ken |
| E-mail address/Adresse de E-mail : | bevken1@es.co.nz |
| Comments/Commentaires:
Does anyone know if Gilberts Disease (ie raised bilirubin,) can be associated with CVIG? Thanks. Ken |
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| Name/Nom: | Kim MacEachern |
| E-mail address/Adresse de E-mail : | kimmaceachern@rogers.com |
| Comments/Commentaires: I have a 4 year old that has been sick FOREVER ! He has an IGG subclass deficiency (IGG2) and a combined b-cell t-cell disorder. He also has osteopenia. We spend our time fighting fires: casts for broken bones, antibiotics for infections, creams for eczema, paste for mouth sores. Wish we had a better diagnosis, and better still, wish we had a cure or at least a tested protocol for dealing with this. Best case scenario we'll keep fighting off infections and muddle through. Worst case scenario is too hard to even think about. | |
| Name/Nom: | Vivienne |
| E-mail address/Adresse de E-mail : | dewdrop21@hotmail.com |
| Comments/Commentaires: Hello.
Is there anybody out there who is receiving IVIG treatment for Multifocal Motor Neuropathy? I was diagnosed last year with Antiphospholipid syndrome(auto immune) and associated MMN. I have recieved two treatments of IVIG 4 months apart and about to recieve my 3rd.The first treatment had quite a profound effect after 3 days in improving functionality in my hand. The second treatment fluctuated a lot until it settled down but the effect was not as good as the first treatment. Has anyone experienced this with IVIG ?? |
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| Name/Nom: | Stephanie |
| E-mail address/Adresse de E-mail : | sstoneleigh@hotmail.com |
| Comments/Commentaires: After 11 years of ongoing and seemingly unconnected heatlh problems, I was diagnosed with MBL (Mannose-Binding Lectin) Deficiency at Weill Cornell in New York in May 2005. Very little seems to be known about it. Doing my own reserach, I discovered that MBL Deficiency predisposes to a host of other illnesses. Celiac Disease is one of them and I was recently diagnosed with that as well. AHas anyone heard of MBL (Mannose-Binding Lectin) Deficiency? Are there any other diagnosed cases in Canada? | |
| Name/Nom: | Mark |
| E-mail address/Adresse de E-mail : | immunitydisorders@shaw.ca |
| Homepage URL/URL De Homepage : | http://http://members.shaw.ca/immunitydisorders/index.htm |
| Comments/Commentaires: Hello everyone
It took me 2 years and a whole lot of researc h to find out that I had a selective IGg deficiency . Even though there seems to be little i can do about my illnes at least I have hope that one day medical science can give me back my life becauses at least I know whats wrong. I am still able to function normally and have a job , fortunately I can maintain my independance. I am always looking for people to share in information about the IgG or other related illnesses. You cna read alot more baout my case at my homepage . Interested please drop me a line . |
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| Name/Nom: | Barb Findlay |
| E-mail address/Adresse de E-mail : | bfindlay@eastlink.ca |
| Comments/Commentaires: I have two children 11 and 10 yrs of age. Both diagnosed at 6 and 5 respectively. Both have had IvIG with good results. During the last year, my daughter's treatments were discontinued as her doctor felt she "might" be generating her own immunoglobulins due to high trough levels (IgG 11.8). Her IgG's have since dropped steadily and are now down to 4.8. She is currently home with pneumonia which tends to be recurrent when she is not on IvIG. Her doctor is not willing to start therapy again. I am frustrated and interested in talking to others who may have experienced similar situations. Please email me. Thanks. | |
| Name/Nom: | Carol King |
| E-mail address/Adresse de E-mail : | cek100@alltel.net |
| Comments/Commentaires: I was diagnosed with CVID a year and a half ago. and I am working on becoming a patient advocate. | |
| Name/Nom: | Barbie Litvack |
| E-mail address/Adresse de E-mail : | barbara.litvack@sympatico.ca |
| Comments/Commentaires: I was diagnosed with CVID over a year ago, and have been on IVIG therapy for 4 months - I have also developed bronchiectasis. It would be super to hear from anyone in a similar situation. | |
| Name/Nom: | michael |
| E-mail address/Adresse de E-mail : | edek@wp.pl |
| Homepage URL/URL De Homepage : | http://www.wyniki-na-zywo.pl |
| Comments/Commentaires: Super site!!
www.wyniki-na-zywo.pl |
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| Name/Nom: | Mercedes |
| E-mail address/Adresse de E-mail : | serenityinhaines@hotmail.com |
| Comments/Commentaires: The site was nice to find.
Anyone with information on recieving disability benifits or social security to pay for treatments would be greatly appreciated. I am in Haines Alaska and my 34 yr old brother was diagnosed a week ago, after being sick for years. PLease help. Thanks THe little sister Merceded |
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| Name/Nom: | Steeve Litalien |
| E-mail address/Adresse de E-mail : | mecaniquepms@videotron.ca |
| Comments/Commentaires: Félicitation pour votre site, je crois qu'ensemble on peut se tenir solide et informé et recevoir les responses à nos questions.Je souffre d'immunodéficience primaire depuis l'âge de 2 ans étant jeune et ado j'étais souvent malade mais grâce a des spécialistes dans le domaine ont su ajuster ma médication et ma dose mensuel et je suis en forme.J'ai 36 ans et je pense que mon systeme est stable.Bravo encore. | |
| Name/Nom: | Diane Shelley |
| E-mail address/Adresse de E-mail : | shelley2u@shaw.ca |
| Comments/Commentaires: I was diagnosed with CVID about a year ago! I never knew what was wrong with me. This website was bought to my attention yesterday and I find it is extremely helpful. Thanks Diane | |
| Name/Nom: | Rico Mascarita |
| E-mail address/Adresse de E-mail : | ricomascarita@gmail.com |
| Homepage URL/URL De Homepage : | http://www.mastroiani.biz/ |
| Comments/Commentaires: félicitations pour votre site!! | |
| Name/Nom: | Al Isaak |
| E-mail address/Adresse de E-mail : | melandal@telus.net |
| Comments/Commentaires: I'm 33 years old and have been recieving IVIG since '96.I'm having a hard time getting life insurance due to my CVID. Does anyone have any advice to help me get insurance.
Thanks Al |
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| Name/Nom: | donna webster |
| E-mail address/Adresse de E-mail : | donnarae57@hotmail.com |
| Name/Nom: | Michael Sandalis |
| E-mail address/Adresse de E-mail : | msandalis@sportsdirectinc.com |
| Homepage URL/URL De Homepage : | http:// |
| Comments/Commentaires: Hello, I would like to receive the newsletter. I was recently diagnosed with CVID and start infusions/transfusions in three days but really do not know what to expect. I am living in Halifax, NS and would be interested in talking with someone with a similar situation to learn more.
Thanks, Michael |
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| Name/Nom: | Karen Laidman |
| E-mail address/Adresse de E-mail : | k.laidman@sympatico.ca |
| Comments/Commentaires: Hello:
Our daughter, has an immunodeficiency; antigammagobulinanemia, diagnosed only when she was 13 yrs. old. Our prayers are thankful every day that she CAN recieve the treatment that she needs to Live,and enjoy the quality of Life that she does today,and that she may continue to do so for as long as she Lives. Renee has become the Mother of our cherished Grandson, Sean, mostly because she was determined that she would have the first male child in a 55 year female Matriarchy! Renee has overcome many obstacles in her life to reach her goals so far. ( and you ain't seen nothin yet!!) Our heartfelt thanks go to Dr. Peter Dent, whose Caring attitude and expertise has helped Renee and, consequently we, her family, immensely. We are also so grateful that there is CIPO to help us. Very Warm Regards, Karen Bob Laidman & Family |
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| Name/Nom: | anne-marie |
| Comments/Commentaires: Est-ce qu'il y aura d'autres conférences sur la sujet en 2005, sur le calendrier c'est toujours 2004. J'ai bien hâte de recevoir la prochaine brochure, a quelle fréquence on lieu la publication?
Merci d'être là |
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| Name/Nom: | Lyse Jobin (mère d'Andréanne Poitras-18 ans) |
| E-mail address/Adresse de E-mail : | souriante43@hotmail.com |
| Comments/Commentaires: Bonjour,
J'ai 46 ans. J'ai eu 3 enfants dont 2 sont atteintes du syndrome de Di George. Le syndrome de di george inclut une immunodéficience, cardiopathie et hypocalcémie. Ma plus vieille est décédée le 29 janvier 83 a l'age de 3 1/2 mois, 16 jours après la chirurgie cardiaque. Mon bébé, l'autre qui est atteinte du di george vient tout juste d'avoir 18 ans. Je viens tout juste d'apprendre l'existence de ce site suite a une réunion qui a été faite a Québec dernierement. J'aimerais bien partager avec des gens qui ont le même problème. Au plaisir de vous jaser. |
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| Name/Nom: | Joanie Scott |
| E-mail address/Adresse de E-mail : | jfs171scott@shaw.ca |
| Comments/Commentaires: Diagnosed with cvid Feb 2004. Also have other autoimmune processes and wonder how/if they relate. I would like to get more info on CVID and its treatment - current/upcoming. Have poor vein access and am considering having a central line placed but I am unsure of Canada/Alberta status of subcutaneous infusions. Any info/suggestions appreciated. | |
| Name/Nom: | sandra |
| E-mail address/Adresse de E-mail : | kaymathews9@aol.com |
| Comments/Commentaires: have cvid and evans syndrome with bad itp | |
| Name/Nom: | Bernice Taylor |
| E-mail address/Adresse de E-mail : | btaylor@kwic.com |
| Comments/Commentaires: By accident I discovered your web-site. I was so happy to learn that there is actually a site dedicated to those of us with auto-immune deficiency diseases. I was diagnosed in '99 with MCTD and I would really like to receive your newsletters to learn more about treatments that are out there for us. Presently I am being treated by a Rheumatologist and seem to be doing quite well but am curious to learn of other forms of treatments. | |
| Name/Nom: | vera |
| E-mail address/Adresse de E-mail : | veralen2004@yahoo.com |
| Comments/Commentaires: hi, my daughter is 20 years old,has diagnozed with cvid,she is receving igg treatments every 3 weeks in toronto.we moved in toronto 9 month ago from moscow,russia.we are looking for
any supports group or meetings in toronto that we can attend and meet people with the same needs. i appreciate any contact that you will provide. thank you vera |
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| Name/Nom: | vera |
| E-mail address/Adresse de E-mail : | veralen2004@yahoo.com |
| Comments/Commentaires: hi,i like to receive all new information about cvid. | |
| Name/Nom: | Pamela Howitt |
| E-mail address/Adresse de E-mail : | trouble7@sympatico.ca |
| Comments/Commentaires: Very interesting site
I was diagnosed about 2 years ago and I am having my infusions every 3 weeks now. Seems to be working much better. |
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| Name/Nom: | Anne-Marie Gravel |
| E-mail address/Adresse de E-mail : | amgrav@cyberus.ca |
| Comments/Commentaires: Mon mari a été diagnostiqué il y une dizaine d'année avec une insuffisance immunisée variable commune (CVID),il a des traitements depuis, il dit sans ça il serait probablement mort aujourd'hui... Il est malgré tout souvent malade, pneumonie, infection des sinus. Il travaille de nuit, c'est pas toujours évident. Nous venons de découvrir votre organisme. Nous sommes très heureux de voir qu'il y de l'entraide. Environ une fois par année les traitements doivent être augmentés car les anticorps sont trop bas, c'est très inquiètant. Nous sommes un peu inquiets pour nos garçons malgré qu'ils ne présentent aucun symptome.
Au plaisir d'échanger |
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| Name/Nom: | Sandra Dragich |
| E-mail address/Adresse de E-mail : | sdragich@telus.net |
| Comments/Commentaires: Please send me your next newsletter. Do you send out minutes fron the last conference? The topics look very interesting. Thankyou Sandra Dragich | |
| Name/Nom: | Hayley Evershed |
| E-mail address/Adresse de E-mail : | hayley_sweet_thing2hotmail.com |
| Homepage URL/URL De Homepage : | http://www.cipo.ca |
| Name/Nom: | susan koley |
| E-mail address/Adresse de E-mail : | susankoley@mts.net |
| Comments/Commentaires: Great website. Considering attending the conference in Ottawa. Sue | |
| Name/Nom: | Moifo |
| E-mail address/Adresse de E-mail : | nethouse012000-mis@yahoo.fr |
| Comments/Commentaires: Mon fils Jonathan qui a aujourd'hui 10 ans vit en Italie et souffre d'une agammaglobulinémie congénitale découvert depuis l'âge de 8 mois.
Il est depuis lors sous traitement d'immunoglobulines IV. Il a une vie normale mais des accès de maladie périodiques se justifiant par une baisse du taux de couverture des immunoglobulines et par l'évolution de l'infection de ses organes. Je suis à la recherche d'informations concernant l'état des recherches médicales dans ce domaine. |
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| Name/Nom: | leza |
| E-mail address/Adresse de E-mail : | vasilievna2001@yahoo.com |
| Comments/Commentaires: i want to know more about ivig treatment?
side effects? thank you |
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| Name/Nom: | Gérard Émond |
| E-mail address/Adresse de E-mail : | gerryem2@yahoo.ca |
| Comments/Commentaires: J'ai 47 et cela fait plus de 20 que j'ai été diagnostiquer hypogamma globulenemi commune variable. | |
| Name/Nom: | Dawn Milton |
| E-mail address/Adresse de E-mail : | dawnmilton3@hotmail.com |
| Comments/Commentaires: Hello , We have 2 sons with immune deficiencys, both requiring transfusions to maintain antibody levels. | |
| Name/Nom: | doreen globman |
| E-mail address/Adresse de E-mail : | Dglobman@shaw.ca |
| Comments/Commentaires: Please put me on your mailing list...I have recently been diagnosed as having an immune deficiency...am not quite sure what else to write, I go for an infusion once a month. I have the spring edition of "the alliance" how do i get new issues? thanks. | |
| Name/Nom: | Jacqui Lewis |
| E-mail address/Adresse de E-mail : | mwlewis@optusnet.com.au |
| Comments/Commentaires: My daughter has had hypogammaglobunaemia since diagnosed at 8mths. She is now 16 and we have been told she has now IGG v3 subclass immune defiency, and low iron stores. She has always had lots of infections and viruses, and had gammaglobulin inject. Now she is having intragram infusions. She too gets very fatigued/tired and takes ages to get over illnesses and requires a lot of antibiotics at times. But more so lately gets a lot of viruses that drag on and on. I was amazed to find this website and read all the other people with similiar problems as you do think you're the only ones going through it. | |
| Name/Nom: | Emma Frame |
| E-mail address/Adresse de E-mail : | frameemma@hotmail.com |
| Comments/Commentaires: HI
I AM A 24 YEAR OLD GIRL FROM MANCHESTER,UNITED KINGDOM WHO HAS JUST BEEN DIAGNOSED WITH COMMON VARIABLE IMMUNODEFICIENCY(CVID). I HAVE SEEN AN HAEMATOLOGIST BUT WAITING TO SEE AN IMMUNOLOGIST AS MY HAEMATOLOGIST THINKS I HAVE OTHER PROBLEMS WITH MY IMMUNE SYSTEM. I HAVE NOT STARTED TREATMENT YET. I HAVE HAD INFECTIONS ALL MY LIFE AND HAVE BEEN ON MANY ANTIBIOTICS SINCE I WAS A BABY. I WOULD LIKE TO HEAR FROM ANYBODY WHO HAS PRIMARY IMMUNODEFICIENCY DISORDERS. IF YOU WANT TO E-MAIL ME, MY ADDRESS IS: frameemma@hotmail.com HOPE TO HEAR FROM PEOPLE SOON. FROM EMMA |
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| Name/Nom: | Leanne Lorimer |
| E-mail address/Adresse de E-mail : | lorimermail@shaw.ca |
| Comments/Commentaires: Looking for info on safety and effectiveness of Intravenous IgG | |
| Name/Nom: | Nadine |
| E-mail address/Adresse de E-mail : | nadine_richer@hotmail.com |
| Comments/Commentaires: Bonjour, J'ai une petite fille de trois ans qui reçoit des gammaglobuline depuis juillet 2003. Malheureusement, nous avons beaucoup de difficulté à obtenir des réponses des médecins. Même si cela fait maintenant un an qu'elle est traité, nous ne savons toujours pas si c'est dû à un retard de développement ou à un virus (ou bactérie). Nous trouvons cette attente très dure car personne ne veut nous dire combien de temps les tranfusions durerons. | |
| Name/Nom: | sophian |
| E-mail address/Adresse de E-mail : | sophian.x@caramail.com |
| Comments/Commentaires: bonjour à tous,je suis atteind de la maladie de bruton,j'ai 30 ans et beaucoups de dégats,j'aimerais parler avec des personnes qui sont dans mon cas; éventuellement sur la maladie et ses symptomes voir si on as des symptomes communs ou pas,voire si ont peut s'échanger des trucs pour nous simplifier la vie etc...
merci à tous |
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| Name/Nom: | Jim Cummer |
| E-mail address/Adresse de E-mail : | van542002@yahoo.ca |
| Comments/Commentaires: Just been diagnosed,had my first treatment last Thursday and am already noticing improvement. But terrified of having treatments every month of my life,if it works. But maybe it is better than the alternative. | |
| Name/Nom: | barbara taylor |
| Name/Nom: | joe Egerton |
| E-mail address/Adresse de E-mail : | valrose@Egerton |
| Comments/Commentaires: I am rewiewing for the first time. | |
| Name/Nom: | sandra |
| E-mail address/Adresse de E-mail : | sdragich@telus.net |
| Comments/Commentaires: Interested in speaking to others with common variable immune deficiencies. | |
| Name/Nom: | Michael Whelan |
| E-mail address/Adresse de E-mail : | miwhelan@telus.net |
| Name/Nom: | Barb Saunders |
| E-mail address/Adresse de E-mail : | barb_saunders@hotmail.com |
| Comments/Commentaires: I'm a 53 year old female, diagnosed in 96, but have probably had CVID since early 80's. I've just started IVIG a couple of months ago, and am due for my 5th infusion, I go every 3 weeks. I feel SO much better, my energy level is much higher than it was. I wish I hadn't been so afraid to get the IVIG before, it has really helped. Thank you for this site. | |
| Name/Nom: | Jenifer Sparling |
| E-mail address/Adresse de E-mail : | ssparling@compusmart.ab.ca |
| Comments/Commentaires: We are new to this, our son who is going on 7. We just found out before christams that he has PID. we go every 6 to 8 weeks for treatments in Edmonton. We have found this web site to be very heplful for all of us. Kept up the good work. | |
| Name/Nom: | Bryan Bennett |
| E-mail address/Adresse de E-mail : | mijas2897@cs.com |
| Comments/Commentaires: Does anyone have information on 'Pemphoides bulleuse (bullense?)'. | |
| Name/Nom: | Marcia Braden |
| E-mail address/Adresse de E-mail : | purrinc@earthlink.net |
| Name/Nom: | connie martin |
| Name/Nom: | hania dahenane |
| E-mail address/Adresse de E-mail : | on |
| Name/Nom: | Kanudscho |
| E-mail address/Adresse de E-mail : | Kanudscho@yahood.de |
| Homepage URL/URL De Homepage : | http://www.kreuzfahrtcenter.com |
| Comments/Commentaires: Kreuzfahrten Kreuzfahrt in die Karbik: Lov Caribbean Seas. Welcome and keep up the goog work. | |
| Name/Nom: | Baby^Girl |
| E-mail address/Adresse de E-mail : | Kool_Dude_3_@hotmail.com |
| Name/Nom: | Mary Nelis |
| E-mail address/Adresse de E-mail : | mary.nelis@sympatico.ca |
| Comments/Commentaires: Hi my name is Mary I live in a small town called
Bedford in the eastern townships in Quebec. Last summer my 4 year old daughter was diagnosed with Mucopolysaccharide( mps 1 type sheie ) wich is lysosomal storage disorder, that means her body can not produce certain enzymes her body needs, resulting progresive damage. we have managed to get special asses to a drug called aldurazime, wich is proven to stop the progresion of this terrible ilness, but for only 6 months because the drug is not aproved in Canada,and costs 180.000 a year. I am told that the drug may be aprooved by the end of 2004. But it is still 180.000 per year. Mary Nelis |
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| Name/Nom: | Tammy Wheatley |
| E-mail address/Adresse de E-mail : | gr8hudonit@yahoo.com |
| Comments/Commentaires: I have been sick for almost 3 years and the only things they can come up with are the following: giant platelets, polyclonal hypogammaglobulinemia, low IgG (662), general lymphadenopathy, mediastinal nodes, soft tissue in retropertineum. My symptoms are terrible pain in the left upper quadrant of chest for over 2 years - take 8 vicodin a day and that only dulls the pain, night sweats, palpitations, sinus tachycardia, swollen hands and feet, abnormal weight gain, occassional lymphocytes in morphology, hormones that are non-existant even though I take HRT for 11 years following hysterectomy. I'm sick and tired of being sick and tired and want my life back. Have only had quantitative immuniglobulins, serum protein elect., and many imaging studies. They thought I had a pheochromocytoma (also called extra adrenal tumor) because my normetenephrines were elevated (even traveled to Mayo in MN and NIH in Maryland) and no turmors have been found.
No doctors know what the polyclonal hypogammaglobulinema is and I'm waiting for a referral to an immunologist. There aren't any in my town.... Any suggestions? Does it sound like anything anyone else has experienced? Help would be appreciated.....!! Thank you and God bless you all! |
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| Name/Nom: | Christine Lombardo |
| E-mail address/Adresse de E-mail : | clombardo@ridoutmaybee.com |
| Name/Nom: | John H Leask |
| E-mail address/Adresse de E-mail : | quoyloo@telusplanet.net |
| Name/Nom: | Nicole Price |
| E-mail address/Adresse de E-mail : | nprice3805@aol.com |
| Comments/Commentaires: I am 45 years old, originally from Montreal, I moved to the US 8 years ago were finally a wonderful internist diagnost my CVID. It certainly explained why I was sick all the time and living on antibiotics. I have been receiving IGIV ever since and it has changed my life. I only wish someone would have recognized the disease earlier. It seems to me so few Doctors even know how to look for the warning signs. Keep educating. | |
| Name/Nom: | Barb Schmidt |
| E-mail address/Adresse de E-mail : | charleyhorseranch@yahoo.com |
| Comments/Commentaires: Just diagnosed last week with IgG subclass deficiency. Have way more questions than answers. | |
| Name/Nom: | Dave |
| E-mail address/Adresse de E-mail : | aemt548@wowway.com |
| Homepage URL/URL De Homepage : | http://www.midf.org |
| Comments/Commentaires: Thanks, keep up the hard work.
Dave Michigan Immunodeficiency Foundation www.Midf.org |
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| Name/Nom: | Christine Francoeur |
| E-mail address/Adresse de E-mail : | christinefrancoeur@hotmail.com |
| Comments/Commentaires: j'ai supposément la maladie de bruton j'ai 40 ans et je sui s une femme.... | |
| Name/Nom: | Wendy Bray |
| E-mail address/Adresse de E-mail : | wendybr70@hotmail.com |
| Name/Nom: | Tana Skelton |
| E-mail address/Adresse de E-mail : | tskelton@telus.net |
| Name/Nom: | Samuel Dumais |
| E-mail address/Adresse de E-mail : | samxxx5@hotmail.com |
| Comments/Commentaires: Salut je m'appelle Samuel Dumais et j'ai 15 ans. Je souffre aussi d'immunodéficience primaire et on le sait depuis 1 an et de plus je suis Dyslexique. | |
| Name/Nom: | Donna Wagner |
| E-mail address/Adresse de E-mail : | doubledw2@hotmail.com |
| Comments/Commentaires: Our son has a type of SCID called Omenn's Syndrome. Anyone else who has it, please contact me. | |
| Name/Nom: | Émilie Côté |
| E-mail address/Adresse de E-mail : | ens181627@videotron.ca |
| Comments/Commentaires: Bonjour, ma maman écrit pour moi car je n'ai que 5 ans, je souffre d'immunodéficience primaire et on le sait depuis 2 mois seulement, je reçois des gamimunes depuis ce temps, j'avais hâte que l'onn trouve ce qui n'allait pas car j'étais souvent malade. | |
| Name/Nom: | Andy Koshykar |
| E-mail address/Adresse de E-mail : | atrac@telusplanet.net |
| Name/Nom: | Jo-Ann McInnis/Mallory Ann LeClair |
| E-mail address/Adresse de E-mail : | jjmcinnis@hotmail.com |
| Comments/Commentaires: Hi, just a note to say how much we enjoyed the conference in Halifax. Hope to get some newsletters or any information on other conference in the future.
Thanks Jo-Ann and Mallory |
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| Name/Nom: | Casey Vandenbrink |
| E-mail address/Adresse de E-mail : | gouldian@sunwave.net |
| Comments/Commentaires: Have been diagnosed with possible fibro myalgia | |
| Name/Nom: | Barb Findlay Murphy |
| E-mail address/Adresse de E-mail : | barbiefindlay@hotmail.com |
| Name/Nom: | Mai Mohammed Saied |
| E-mail address/Adresse de E-mail : | myoon@sudanmail.net |
| Homepage URL/URL De Homepage : | http://sudanmail.net |
| Comments/Commentaires: Want to be apart of you, i am patient single 33Years live in sudan how can you help me. | |
| Name/Nom: | Dwayne Greer |
| E-mail address/Adresse de E-mail : | dwaynegreer266@hotmail.com |
| Comments/Commentaires: I entered this site to get more info on immunedeficiencies due to that fact that my soon to be born son will likely have one or the immunedeficiencies x-linked scid or x-linked agammaglobulinemia hyper IgM
thanks for all the help. |
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| Name/Nom: | Shelley Schonwald |
| E-mail address/Adresse de E-mail : | sschonwald@hotmail.com |
| Comments/Commentaires: I was recently diagnosed with IgG Secondary Deficiency and receive IVIG treatment every four weeks. The treatment has made a big difference in my energy level and the amount of time that I am sick. Even with treatment, it seems as though if I don't get enough sleep or have too much stress I get flu-like symptoms. Does anyone else experience this? | |
| Name/Nom: | Danny Lombardi |
| E-mail address/Adresse de E-mail : | d.lombardi@sympatico.ca |
| Comments/Commentaires: Hi there,
I've been living with hypogammaglobulinemia for 16 years, so I've got some stories to tell. I'm very interested to hear what research says about long-term treatment with products such as Gammagard. I may have finally found a resource! |
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| Name/Nom: | Donna Wagner |
| E-mail address/Adresse de E-mail : | dwagner@telusplanet.net |
| Comments/Commentaires: If there is any family with Omenn's Syndrome please contact me. I would like to get some kind of support group going. | |
| Name/Nom: | Michelle Choi |
| E-mail address/Adresse de E-mail : | michelle.choi@edelman.com |
| Name/Nom: | Amy Hand |
| E-mail address/Adresse de E-mail : | shbrutus@aol.com |
| Comments/Commentaires: I have a 10 month old son that has been diagnosed with Iga Deficiency. Can you provide any information to me about this disease iu regards to him being an infant. Any suggestions on keeping him comfortable and safe would be helpful and any advise on keeping him as healthy as possible. Thank you Amy | |
| Name/Nom: | Carolyn Bickley |
| E-mail address/Adresse de E-mail : | colin.bickley@ntlworld.com |
| Name/Nom: | tara |
| E-mail address/Adresse de E-mail : | pochaco326@aol.com |
| Homepage URL/URL De Homepage : | http://none |
| Comments/Commentaires: Dear Expert,
I would be very grateful if you would answer my questions. Can you please send me a brochure, tape, movie, book,or/and some document with information about the PID, called SCID, that your agency/foundation made? And can you send it to me fast because I really need information? I need it by 2/30/03 because I know someone with it and I'm really interested. That person can't get near germs but I don't know why, and I really want to help him. He's only 7 months old and they just found out he got it because of a blood test, so can you please help me? THANK YOU!!!!!!! |
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| Name/Nom: | basters |
| E-mail address/Adresse de E-mail : | robinsonmac2003@yahoo.ca |
| Name/Nom: | Robin Gage |
| E-mail address/Adresse de E-mail : | bgage@olp.prn.bc.ca |
| Comments/Commentaires: I can't believe I didn't know about this website until now! We live in a small community on the Alaska Highway in Northern B.C. We have 2 sons aged 21yrs and 16yrs with CVID.Both boys were diagnosed at 2 yrs of age, and have been receiving IVIG infusions every 2 weeks since.12 years ago we set up our own Home Infusion Program with the help of a very supportive health team. This CIPO website is fantastic resource for doctors, nurses, and all those living with Immune Deficiencies! | |
| Name/Nom: | Ezrom |
| E-mail address/Adresse de E-mail : | mokgakala@yahoo.com |
| Comments/Commentaires: I want to know if there are any benefits for someone who is HIV Positive. I am working with people who are interested in helping this group of people. Can anyone give em examples? | |
| Name/Nom: | Ringtones |
| E-mail address/Adresse de E-mail : | jillyryan88@hotmail.com |
| Homepage URL/URL De Homepage : | http://www.ringtones-world.com |
| Comments/Commentaires: j'aime votre travail. | |
| Name/Nom: | Martin |
| E-mail address/Adresse de E-mail : | Mefy_has@Yahoo.ca |
| Comments/Commentaires: Bonjour, je me nomme Martin, j'ai du commencer des traitement de gamma immuno-globuline ça fait trois semaines. Le prochain sera le 23 décembre 2002. C'est quelque chose de tout nouveau pour moi, je nage dans l'inconnu. On m'a dit que mes globules blanc étaient descendu bas à cause d'une forte médication (antibio et prednisone) suite à un syndrôme rare (dyskinésie ciliaire). On m'a dit que ce serait peut-ête à vie, je n'en sais rien. Moi, j'espère que non car là les doc je crois que je les ai assez vu. Ce n'est qu'une opinion. c'est temps-ci je suis comme un gamin dans une garderie, j'attrappe toute ce qui passe. (Sinusite, bronchite, pneumonie...etc). Vu que je ne suis pas un grand placotteux je m'arrête ici. J'aimerais cela communiquer avec quelqu'un qui est comme moi ou un membre d'une famille qui a eu quelqu'un comme moi. Salutation et bonjour à vous tous Martin | |
| Name/Nom: | Jean-Luc Dumont |
| E-mail address/Adresse de E-mail : | dumontjl@cooptel.qc.ca |
| Comments/Commentaires: Ma jeune fille a été diagnostiquée SCID (Déficit immmunitaire combiné sévère) à l'âge de 8 mois et est décédée en septembre 2002 à l'âge de 14 ans. Comme il est difficile de rencontrer des francophones pour partager nos expériences, vous pouvez au besoin communiquer avec moi. | |
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