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Updates from CGD Patients and Families (2011)
Before the 2011 Immune Deficiency Foundation (IDF) Conference held in Pheonix, Arizona from June 23-25, 2011, we sent out a flyer to a number of people and asked for updates on how they were doing. There were so many wonderful responses that we wanted to share them with our CGD families. With permission we've posted some of them here.
Please feel free to share your updates via cgda@socal.rr.com. If you'd like more information about the upcoming conference, send an email.
"…[He, age 8] has had his share of being quite healthy and difficult pneumonia's. Currently he was at the NIH for nine days and came home with a pic line because of pneumonia. We would love to attend the conference…" (Massachusetts)
"…[He] is 11 years old now! He is enjoying the 5th grade… diagnosed with colitis… We are just thankful he is doing well!..." (Massachusetts)
"…[He, age 8] is doing well (Thank God)… It has been somewhat easier to manage as [he] gets older. He knows the things he needs to avoid and is good about washing his hands… He goes for swim lessons and we will start tennis lessons in the spring. He is on the small side but still within the range of his classmates…" (New York)
"…Both [boys, ages 11 & 14] had the umbilical transplants…I am willing to answer any questions anyone has at any time…BOTH boys are completely cured of CGD!!..." (Georgia)
"…[He] is 25 now, has a son 3. I'm a grandma. Something I thought would never happen. He has been pretty healthy this year…" (Florida)
"…[He, age 3] has been really healthy. After his initial diagnosis at 6 mo. old he developed a severe feeding disorder…Last summer we spent 2 months at John Hopkins and he went from being 100% tube fed to taking all his food by mouth. He still can only eat pureed foods, and his meals are difficult, but it’s a huge improvement! He has been infection free for 2 years now!.." (New York)
"…[He, age 6] has been extremely healthy, and next spring, we are planning to do bone marrow transplant… he has not had even one major infection in his 6, nearly 7 years of life" (Oklahoma)
"…[He, age 5] seems to be doing great for the time being…I am going to forward this [info about the IDF Conference] to a family that's son was just diagnosed with CGD that live near me. Their son is the first in their family to have CGD. They may be interested in coming to this…" (Illinois)
"…[He, age 23] he is alive....and very thin. [He, 25] is well…" (Pennsylvania)
"…[He, age 16] has been stable for two years… We have attended a IDF conference when it was in Orlando, very informative. We will have to look into the possibility of attending this one in Arizona…" (Florida)
"…I’m 18 years old… I was diagnosed with CGD at around 9 months I believe and for a long time after that I was in the hospital more than I was at home. I am doing great now. I haven’t been in the hospital since I was 13…" (Ohio)
"…[He, at age 19, 1st son] went home to be with the Lord in February, 2005…[He, age 23, 2nd son] in college in Iowa. He was declared "fixed" by his University of Iowa doctor in March of 2009…[His sister] was a perfect match bone marrow donor…We would be willing to share our story with anyone interested…" (Illinois)
"…[He] is 16 and doing well. He is only having real bad acne problems. But it bothers me more than it seems to bother him. We do [hope] to attend the IDF Conference in Phoenix…" (Georgia)
"…[He] is 18 now and unfortunately has his first fungal lung infection in 10 years…We just returned home yesterday from NIH… We will see how things look again next month…" (Arkansas)
"…After a lot of ups and downs (several operations, years of battling chronic colitis etc.) our doctors told us that [his, now age 12) only therapy would be a bone marrow transplant… The actual transplant happened on 8th of April 2010… Since then [he] is doing better every month… And of course we would be glad to answer any questions!..." (Germany)
"Transitioning to adult care from pediatric care is difficult, especially with children going off to college in other states. This is an area where parents need to do their homework and be prepared in advance."
"…My older son (23) graduated from UC Berkeley last year and is now at University of Chicago getting his masters in Anthropological Archeology… He has stabilized well…[My other son] (21)… On top of his CGD and mild type II Von Willebrand's, he was "diagnosed" with celiac's disease, lactose intolerance, and primary sclerosing cholangitis… He plans to attend the IDF conference as a Junior Leader connecting up with his buddies he met at the SF conference…" (California)
"…[age 46] [doing well]…" (Minnesota)
"…[He] (age 8) is a yellow belt in karate, a cub scout, flag-football player, baseball star, swimmer, an artist and all around awesome kid. Oh yes, and he has CGD…" (Maryland)
"…[He] is doing well just turned 20 a week ago and so far no more serious complication since he diagnosed about 12 years ago…" (Michigan)
"…[He] has been very well for a long time! He now attends the NIH once a year and is on a life time protocol. What a wonderful place the NIH is. They really made us feel cared for and gave me such hope for [his] future… He has not had to be hospitalized since he was 7 and he is now almost 20…" (Ontario, Canada)
"… He [age 20] has done well ever since [had Aspergillus in right lung 2005-07]. He was able to graduate from High school with his class even after missing all for his sophomore and junior year…[He] is currently taking business management classes at a local Tech school and doing well…If I can assist any other CGD patient or family I would feel honored." (South Carolina)
"…This is a big year in my life as I am turning 40. So attending the conference and meeting families would be something I would very much like to do…" (Maryland)
"…She [age 26] is in a very good health condition and enjoying her routine in life…" (Iran)
"…[He] is doing great! He’s on his meds and has not had any major infections since he was diagnosed at 8 months, he will be 2 1/2 in April… I hope we can find a cure soon…" (California)
"I’m 50 years old…By God’s grace, I have been quite healthy and continue to function like a normal person. In fact, the last time I went to NIH I asked them do I really have CGD? They said yes… My twin sons will graduate high school this year." (South Carolina)
"He is 29 and doing well… He has been much healthier than his two brothers from birth which we are so grateful for… He plays tennis with his wife and they are expecting their second child in April. He has a good job after graduating from college in business. Not rich by any means, but doing fine…" (Utah)
"I am 27 in a couple weeks, and doing well. No major infections." (British Columbia, Canada)
"I am 35....I have been fairly healthy since 2006 when I got Granulibacter bethesdensis....I have a girlfriend and we are pretty serious with each other. She is great and we enjoy being around each other. We have been together for almost a year and is starting to understand some of the challenges of the disease. We are excited about the future and hopeful for a reliable cure in adults soon!" (California)
"[He] has been doing o.k. He hadn't been growing and I asked for his Endocrinologist to test him....he only grew a cm in 2 years. In January he was tested and it was found for whatever reason he wasn't producing adequate growth hormone. On Monday (this week) we went to sick kids hospital to start growth hormone. [He] just turned 13 in February." (Ontario, Canada)
"… [He] will be 16 yrs. old in a few weeks and is in good health… I count my blessings every day…" (Hawaii)
"…my daughter [age 14]… She currently is doing ok with fevers but she is having a horrible time with fungus infections growing on her face and body…[this is not uncommon for CGD patients]" (Massachusetts)
"… in Jan 2005, at age 9, we did proceed with a BMT at Duke University…[He] was a sibling match with his older sister… All turned out well… Overall we had a very positive experience at Duke and would be glad to share with anyone who wants to know more…" (Virginia)
"…Things are going relatively well, all in all…He will be 43 in January and has a little girl, Sarah (names after my mother Sylvia) who is just over a year)…" (New Jersey)
"…[He] turns 28 on Saturday! And is getting married in the spring. He’s been going fairly well. He hasn’t had any real severe incidences since grammar school…He’s always struggled with skin issues though, very dry and red…It’s so hard not to worry about his every hiccup as he gets older. I’ve never learned to handle it well…Back in ’99 I was almost wiped out with bacterial pneumonia. After another 3 more incidences with pneumonia in less than four years my immunologist finally put me on a daily maintenance of Bactrim, and classified me as a carrier who mimics the disease…" (New Hampshire)
"… Age: 43… Since we have friends that live in Phoenix that we can stay with, I will seriously consider attending the IDF conference and will talk with my wife about it…" (Illinois)
"… I have already registered my son & I for the conference…He [age 8] is currently in good health and we just had the opportunity last week to finally get to NIH where I learned many new things and they are looking for a bone marrow match for him in case I decide that is the way I want to go…" (Georgia)
"…[He] is now 10. He will be 11 in September of this year. He is continuing to be a strong young man. He has thankfully been healthy, with no major illnesses. Every day we still count as a blessing… With me being an X-linked carrier, I have been having lots of different health issues. Not very serious ones, but to where they are impacting my everyday life. Really bad sinus issues, extreme fatigue, body soreness." (New York)
"…[He] is 17 now… doing okay… We also have been to the NIH and met Dr. Holland. We really like him!!..." (Missouri)
"… He is now 27 and getting married in September…[the other] is now 24, cured, and doing well… had a stem cell transplant [1999] He does have minor chronic graft vs. host disease which he discounts as just an inconvenience he can live with." (Colorado)
"… My sister [age 51] and I [age 53] are both doing well. I am still working full time and (knock on wood) haven't had any major health issues lately…" (Kansas)
"… [He, age 30] is doing very well. In the past 10 years he has only dealt with acne. He’s taken a generic antibiotic, which has been very helpful.  Since he has autosomal recessive, he's among the CGD patients who have fewer infections…" (Michigan)
"[She] is doing very well. She's 10 now and doing all the things girls her age do: gymnastics, dance, girl scouts, and complaining about her homework. She's had no major incidences (knock on wood), but has some mild chronic issues (digestion, etc.) that may or may not be CGD related… she hasn't tolerated the prophylactic antibiotics very well and the antifungals were a complete disaster (she became very light sensitive - not good for desert dwellers)…" (California)
"… [He] is now 21 with a precious baby boy…who will turn 2 March 15th! ..." (Texas)
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