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Updates from CGD Patients and Families (2013)
Before the 2013 Immune Deficiency Foundation (IDF) Conference held in Baltimore, MD from June 27-29, 2013, 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.
If you have CGD or have a child that has CGD, please send an update to cgda@socal.rr.com. We'd love to hear from you!
"…I am doing well. My last major infection was 2009 and I was treated for Granulibacter bethesdensis for four months and had minor surgery… I am turning 42…which is amazing…" (Maryland, USA)
"…he's [age 32] not had an infection that necessitated serious intervention since 2001- for which we're all most thankful. It seems as long as he stays away from the obvious sources of likely infection (grass clipping/hot tubs, etc.) and addresses a minor infection quickly- he seems to be doing well…" (Michigan, USA)
"…[He, age 44]…diagnosed with celiac disease…had a heart attack…the most they could come up with was that he had a virus around the heart that he couldn't fight…the pacemaker is helping…no way to know if it was related to his CGD…[from patient] I'm on Coreg, lisinopril, Bactrim and itraconazole. I also take a multivitamin, vitamin D, fish oil, CoQ10, Alpha-lipoic acid, ginkgo, and a probiotic to replenish the good bacteria stripped away by Bactrim…" (New Jersey, USA)
"Since being diagnosed [had severe Crohn's disease symptoms & helped by sulfasalazine] in August 2010 at age 3 [he] has been quite healthy.  He's had one minor granuloma on his knee that was treated with a standard course of antibiotics and one ear infection, which was also treated with a standard course of antibiotics.  He is growing and thriving.  He started kindergarten this fall and is doing well in school." (Alberta, Canada)
"…my son, age 11…has X-link CGD and has been more ill since January 2012 and has missed school every other week.  Everyone that asked about his health, I used to tell them "we take it day by day".  Now I tell them "minute by minute" because with [him] you just never know…My son asked me if we can do a fund raiser and collect money for his CGD.  His goal is collect a lot of money so they can find a cure as soon as possible.  Not bad thinking for an 11 year old… [He has had] bad bacteria growing near his groin area which is causing him a lot of pain and also not allowing him to walk.  He has had 4 biopsy and thankfully whatever is growing is treatable" (Pennsylvania, USA)
"…He is 16 years old now. For the last 12 years, he has done well in the maintenance phase. Two years ago he had his first breakthrough infection that presented as a lymph node abscess in his neck. He spent several days in the hospital and had a PICC line. About 6 months ago he developed an oxacillin-resistant Staph infection that presented as an abdominal rash. He had a short term hospital admission for that and no central line placement…" (Rhode Island, USA)
"We are still contending with issues since his [age 15] bowel perforation 16 months ago. He still has his temporary ileostomy and still gets IV nutrition every night via a PICC line at home…" (Ontario, Canada)
"…The year has gone by well with no issues with him [age 6] since his May-August pneumonia last year.  He had a neck abscess surgically drained a little over a year ago, and then had a bacterial infection that caused the pneumonia where he was misdiagnosed for tuberculosis.  Since his recovery his genetic tests came back as NCF1 (p47-phox) recessive CGD and not x-linked.  Our family also had HLA typing done in which we do not have a match in our immediate family…" (Alberta, Canada)
"He] is now 7 and is in the 1st grade…He has not had a serious infection since diagnosed at age 2 with a severe lung infection. He is on daily Bactrim and Sporanox. [He] was diagnosed at Geisinger Medical Center in Danville, PA in 2007…After waiting for 4 years, the insurance company finally authorized payment for genetic testing and [he] has diagnosed with the rare NCF1 type of CGD. Apparently this is a milder form which is great news, however, it also means that both parents are carriers of the disease…Geisinger is trying to obtain coverage to have [his] only sibling, a 12 year old sister, tested…" (Pennsylvania, USA)
"…I've [age 45] had no major infections recently. I'm generally contending with "normal" health issues for a person my age – high blood pressure, allergies, etc." (Illinois, USA)
"…son…is now 18 and doing quite well. He has had severe acne problems now for a year and a half but it seems to finally be under control. We regret he has to take the horrible drug Accutane but it was our last result.   He is rigorously completing his senior year with anticipation of graduating May 24, 2013 and going to college.  I'm sure you know that this college process brings up whole different anxieties…" (Georgia, USA)
"…My daughters…are almost 14 and have been in good health for several years now. They are technically only carriers of CGD but their functioning neutrophil count is low (between 2 and 17%) so they have taken antibiotics prophylactically since 2010, when [one of them] had a case of osteomyelitis, diagnosed by Dr. Holland on our annual visit…[One] is allergic to Bactrim, so she takes trimethoprim (300 mg daily). [The other] takes Bactrim (4 single strength daily). They do not take any other medication related to CGD…" (New Jersey, USA)
"…I [age 55] am doing pretty good. I am having trouble with memory loss. I have gone through testing and no cause was determined. My sister [age 53] is having colon problems and is on prednisone which has caused extreme weight gain. Other than that we are doing ok…" (Kansas, USA)
"…He [age 3] had his BMT at Texas Children's Hospital (TCH) in Houston Feb. 2012… [He] had an unrelated donor matching 9/10 with fully ablative preparative regimen.  He had some setbacks with lung inflammations, but that seems to have resolved.  Currently, he is having some issues with platelet and hemoglobin numbers being really low.  We are monitoring and trying to see what our course of action will be…Our reason for going out of state was TCH had 100% success rate with CGD BMTs and 2/3 of them were with unrelated donors.  And they have done about 20 CGD BMTs, which is one of the highest in the nation.  Before transplant, [he] had an infection of unknown origin which landed him in the hospital 2x at CHLA in Oct. and Nov. of 2011. The infection manifested with persistent fever and large skin lesions all over his body.  It was treated with IV antibiotics…One more thing, [he] engrafted 100%." (California, USA)
"…I just turned 38… mid…I started having bowel pain (I have Crohn's)…complete bowel obstruction. It has been almost 8 years since I had my colostomy and I had never had an obstruction before… I have faith that between my gastro doctor and my infectious disease doctor, we will find a way to get me back to "normal". I just don't know how long it's going to take. The thing that keeps me going is the unfailing love and support from my girlfriend and my parents…" (Minnesota, USA)
"… [He] just turned 3 and has been infection free since his initial diagnosis. He takes his Bactrim and Sporanox with no problems. He also gets injections 3 times a week of gamma reluctantly, but he has had no adverse reactions so that is great…our daughter is a DNA match for [him]. [His doctor] is advising us to wait before attempting BMT. We are following his recommendations for the time being…Our daughter has been diagnosed as a carrier of CGD as well…" (Colorado, USA)
"…I [age 29] got married in 2008 to my wonderful wife…We have an awesome 6 month SON!.. Emphasis on the SON, since CGD is out of the picture for him at least!... My health has been good for the last couple of years. I had a run in with fungal pneumonia in January 2010. I lost the upper portion of my left lung in the ordeal, but I have been healthy since…" (Florida, USA)
"… [She] is doing well.   She's just turned 18, is graduating from high school and going to college in the fall.   She's had two knee surgeries over the years unrelated to CGD, and both resulted in infection.   However, the last one, this past December, wasn't bad, and she was able to fight it off without staying in the hospital…" (Florida, USA)
"…My boys [age 12] haven't had any illnesses at all this year…not even a virus, so nothing to update. Last trip to NIH they had scans and there are a few nodes on their lungs, but no increase from previous scans. They are currently on Bactrim, itraconazole, mesalamine (for GI). They both have disease evident in GI tract but no symptoms or flare ups since starting the med) and a reflux med…" (New York, USA)
"…He [age 10] is doing well. He's been without a major infection since being diagnosed and has been to the NIH on a regular basis.  They are considering adding interferon shots to the current antifungal and antibiotics regime.  I'm not sure if I am ready to take that step as it seems he is doing well with just the pills…" (Georgia, USA)
"…He [age 12] had his transplant on July…2012. He is doing great and it appears that the transplant was successful and [he] is cured. He returned to school and all of his activities 50 days post-transplant. In total he missed less than one month of school…" (Maryland, USA)
"…Our son…died…exactly a month old. I was then tested positive for X- linked CGD in the Spring of 2011. My mother was tested negative for the disease in Fall of 2012…In the past year I have had many skin issues--besides the frequent psoriasis outbreaks. I've had many outbreaks of pimple like bumps mostly under my arm and on my upper body. Around Christmas 2012, they cultured it and it came back as being Serratia marcescens. (This makes me wonder if it has anything to do with me being a carrier of CGD, since Serratia marcescens is one of the common ways to diagnose infants with CGD…" (Arizona, USA)
"… [She, age 28] is feeling well and still working full time. She had a kind of respiration difficulties in two periods of time in the last year, but now she sleeps with oxygen apparatus through the night…" (Tehran, Iran)
"[He] is doing really well. He had a bone marrow transplant 15 months ago at CHLA. He is still doing follow up visit and treatments once a month and is being slowly weaned off his meds. The BMT doctors are wonderful at CHLA. He received his bone marrow from a non-relative off of the registry.  He is a junior in high school and will graduate with his class. It's definitely been a journey…" (California, USA)
"…He [age 10] had a quick stay at the hospital in February. He was at school in the afternoon by evening his neck was swollen and we were on our way to the ER.  He was admitted and responded very quickly to the IV meds. In total he missed 3 days of school. Thank God everything happened so quickly. We didn't even have time to panic…" (New York, USA)
"… [He] has been doing great!  He is finishing his junior year in high school and will turn 18 next month. He has a job working at the bowling alley and plays tennis, volleyball and bowls for his high school.  He has been very healthy.  He had an abscess in 2009 that required surgical drainage and hospitalization, but other than that he has not had any major infections in the past several years.  We have all been very blessed…" (Colorado, USA)
"…My son was cured of CGD. He had a stem cell transplant using umbilical cord blood at Duke. He is 2 1/2 years post-transplant and is doing wonderful. He is 6 years old now… We have a 4 year old daughter who has not been tested yet to see if she is a carrier. I am hoping to do that soon as I have had quite a few health issues (not sure if they are related to being a CGD carrier). But it would be good to know for her. I am in a study through the NIH on lyonization of CGD carriers. My numbers have dropped from 49% to 27% active neutrophils. I guess you can function above 11%..." (Wisconsin, USA)
"…He [age 26] is doing better. The doctors…put him on a low fiber diet and he feels it is helping with his GI issues…" (New York, USA)
"…I can't believe it's been 3+ years since [he] had his transplant. It's hard to remember how many times he's been on antibiotics and hospitalized--that's a great feeling (I think I recall one actual hospitalization, just overnight in ER)! He's recovering so well and I'm now a big proponent of transplant. I sometimes follow the CGD Facebook posts and it's very disturbing to see what others are going through, even though we ourselves were deep in that situation not too long ago. I pray that others get the healing and relief from their medical conditions as [he] has. I still worry about his full recovery (which won't happen in my mind until he's completely off all his meds--we're close with only hydrocortisone left to go, though he seems to pick up viral infections rather frequently with his young immune system!) and about his ability to have CGD-free children. My daughter, his donor, is a CGD carrier like me (although she registered as a very high normal) and so [he] will also be faced with the same predicament when it comes to reproduction. I'm hoping by the time they are thinking about having kids, we will have found a cure or some gene therapy will help eliminate their concerns once and for all!" (California, USA)
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