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Experiences with
Hereditary alpha tryptasemia
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Struggling to get diagnosed
Hi there. I am looking for some advice please. I have asthma - at least I think I have it I have never had a spirometer test. I have been on and off inhalers for years but this past two years I have had to use them daily. I am on serotide 250 and ventolin. I have had peak flows - lately they have
Hi there. I am looking for some advice please. I have asthma - at least I think I have it I have never had a spirometer test. I have been on and off inhalers for years but this past two years I have had to use them daily. I am on serotide 250 and ventolin. I have had peak flows - lately they have
rach212
in
Lung Conditions Community Forum
7 years ago
Abbreviations
As request by Huggs with Contribution from Blackly C, Puffthemajicdragon,cofdrop, Offcut.
6MWT
............Six minute walk test
A1AD
.......... .Alpha 1 antitrypsin deficiency emphysema
Ab
..................Asthmatic Bronchitis
ABE
...............Acute Bacteria Exacerbation of
As request by Huggs with Contribution from Blackly C, Puffthemajicdragon,cofdrop, Offcut.
6MWT
............Six minute walk test
A1AD
.......... .Alpha 1 antitrypsin deficiency emphysema
Ab
..................Asthmatic Bronchitis
ABE
...............Acute Bacteria Exacerbation of
stone-UK
in
Lung Conditions Community Forum
7 years ago
MORE Updated DNA REPORTS
What can a lay person like myself interpret FROM jigsaw that is my DNA. There for I'am ... Doing my research i have found WHEN DNA error occurs you body try's to fix one error but that one fix leads to more. But how and why CONNECTED as eluded me. Take one of my inherited conditions or DNA mutations
What can a lay person like myself interpret FROM jigsaw that is my DNA. There for I'am ... Doing my research i have found WHEN DNA error occurs you body try's to fix one error but that one fix leads to more. But how and why CONNECTED as eluded me. Take one of my inherited conditions or DNA mutations
Hidden
in
Lung Conditions Community Forum
7 years ago
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Diagnosed with MAC pneumonia, FEV had declined 25% what us next!?
Hey all! This is my first post😌I have been diagnosed with alpha-1 antitrypsin deficiency, COPD with emphysema, bronchiecstasis, and factor v Leiden deficiency! I have had bilateral blood clots in my lungs, arms and legs. Now I was told I have mac pneumonia from mycobacterium avium intercellular complex
Hey all! This is my first post😌I have been diagnosed with alpha-1 antitrypsin deficiency, COPD with emphysema, bronchiecstasis, and factor v Leiden deficiency! I have had bilateral blood clots in my lungs, arms and legs. Now I was told I have mac pneumonia from mycobacterium avium intercellular complex
Golfgirl2017
in
Lung Conditions Community Forum
7 years ago
Can you help? Have you ever had tuberculosis? Or have you been diagnosed with Alpha 1 antitrypsin deficiency?
Hi everyone, Can you help? Have you ever been diagnosed with Tuberculosis or Alpha-1-antitrypsin deficiency? We’re reviewing our information on both TB and alpha-1-antitrypsin deficiency (AATD) and we’d love to know your thoughts. Our information covers symptoms, diagnosis and treatment. If you
Hi everyone, Can you help? Have you ever been diagnosed with Tuberculosis or Alpha-1-antitrypsin deficiency? We’re reviewing our information on both TB and alpha-1-antitrypsin deficiency (AATD) and we’d love to know your thoughts. Our information covers symptoms, diagnosis and treatment. If you
Hidden
British Lung Foundation
in
Lung Conditions Community Forum
7 years ago
First timer
Hi I have COPD, diagnosed in 2011. Struggling to stay working, the company has allowed me to work from home and only go in on occassion. Don't know how long I will manage even with this privilege. The stress I used to live for is now becoming overwhelming, I'm exhausted all the time. Going from super
Hi I have COPD, diagnosed in 2011. Struggling to stay working, the company has allowed me to work from home and only go in on occassion. Don't know how long I will manage even with this privilege. The stress I used to live for is now becoming overwhelming, I'm exhausted all the time. Going from super
RoxyJ
in
COPD Friends
8 years ago
Sores in nose
Hi im jeri0962. I've been on oxygen for quite awhile but only at night. Just recently they put me on continuous oxygen. I have COPD and alpha 1 antitrypsin deficiency. Recently I have been having sores all through my nasal passages. Very painful. Using Ayr gel but doesn't seem to be working. Any advice
Hi im jeri0962. I've been on oxygen for quite awhile but only at night. Just recently they put me on continuous oxygen. I have COPD and alpha 1 antitrypsin deficiency. Recently I have been having sores all through my nasal passages. Very painful. Using Ayr gel but doesn't seem to be working. Any advice
jeri0962
in
Lung Conditions Community Forum
8 years ago
Squamous cell lung cancer
Hi i'm Kirk and i have lung cancer. I have Surgery on the 17th of this month, they my take the whole right lung, very scared, as i'm going through this 100% alone, and any advice on this would be awesome. As i don't know what to expect, and that scars me. I've been a self employed auto mechanic for the
Hi i'm Kirk and i have lung cancer. I have Surgery on the 17th of this month, they my take the whole right lung, very scared, as i'm going through this 100% alone, and any advice on this would be awesome. As i don't know what to expect, and that scars me. I've been a self employed auto mechanic for the
kirkmills1
in
Lung Cancer Support
8 years ago
Brand New developments in finding the genetic defect which causes EDS hypermobility type
one-gene-mutation-links-three-mysterious-debilitating-diseases http://www.mdedge.com/rheumatologynews/article/115772/dermatology/tryptase-gene-variant-linked-gi-joint-and-skin-symptoms https://www.nih.gov/news-events/news-releases/nih-scientists-uncover-genetic-explanation-frustrating-syndrome https://www.niaid.nih.gov/research/
hereditary
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alpha
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tryptasemia
-faq
one-gene-mutation-links-three-mysterious-debilitating-diseases http://www.mdedge.com/rheumatologynews/article/115772/dermatology/tryptase-gene-variant-linked-gi-joint-and-skin-symptoms https://www.nih.gov/news-events/news-releases/nih-scientists-uncover-genetic-explanation-frustrating-syndrome https://www.niaid.nih.gov/research/
hereditary
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alpha
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tryptasemia
-faq
Jay66
in
Ehlers-Danlos Support UK
8 years ago
Changes in sense of smell
Hello all. Just wanted to see whether other people with lung conditions have experienced changes in their sense of smell as their lung issues developed. I have alpha 1 antitrypsin deficiency (zz) and shortly before I learned of this I noticed my sense of smell changing. This seems to have come on quite
Hello all. Just wanted to see whether other people with lung conditions have experienced changes in their sense of smell as their lung issues developed. I have alpha 1 antitrypsin deficiency (zz) and shortly before I learned of this I noticed my sense of smell changing. This seems to have come on quite
zorro1
in
Lung Conditions Community Forum
8 years ago
Room for one more? Recently diagnosed with emphysema without any obvious cause.
Hi there, I have been following this forum for a while, finally decided to sign up today. Hope you have room for one more ☺️ I have recently been diagnosed with severe unilateral panlobuloar emphysema with several large bullae in the lower lobe. Due to the emphysema I have moderate COPD. I have been
Hi there, I have been following this forum for a while, finally decided to sign up today. Hope you have room for one more ☺️ I have recently been diagnosed with severe unilateral panlobuloar emphysema with several large bullae in the lower lobe. Due to the emphysema I have moderate COPD. I have been
MsMoeller
in
Lung Conditions Community Forum
8 years ago
4 years plus, post transplant
Post TRansplant Hi Anybody out there developed problems nearly 5 years post transplant.? My husband was transplanted December 2011 due to Alpha 1 Antitrypsin Deficiency which had caused cirrhosis and HCC (liver cancer). Some of his early symptoms pre transplant have returned and we have been told
Post TRansplant Hi Anybody out there developed problems nearly 5 years post transplant.? My husband was transplanted December 2011 due to Alpha 1 Antitrypsin Deficiency which had caused cirrhosis and HCC (liver cancer). Some of his early symptoms pre transplant have returned and we have been told
freddie76
in
British Liver Trust
8 years ago
Mortgage Life insurance: Segmental Bullous Emphysema
Hi All, New to this- will gIve basic lowdown on my condition and then the specific Life insurance problem i have: I'm age 34, about 5ft 11, 12.5st male. Smoker of 15- 25 rollies a day for 20 years (Quit last month/ July 10th 2016) Smoker of cannabis / marijuana back in the day for about 15 years and
Hi All, New to this- will gIve basic lowdown on my condition and then the specific Life insurance problem i have: I'm age 34, about 5ft 11, 12.5st male. Smoker of 15- 25 rollies a day for 20 years (Quit last month/ July 10th 2016) Smoker of cannabis / marijuana back in the day for about 15 years and
djdj82
in
Lung Conditions Community Forum
8 years ago
KOKO
I am new to this site. Stage 3 copd. Although sob I manage ok. I have also been diagnosed Alpha 1 antitrypsin PiMZ. This means my lungs are more vulnerable to problems . I have never smoked. Seen consultant and off to PR and CT scan ASAP. Could be a candidate for LVRS. Anyone had this op? C
I am new to this site. Stage 3 copd. Although sob I manage ok. I have also been diagnosed Alpha 1 antitrypsin PiMZ. This means my lungs are more vulnerable to problems . I have never smoked. Seen consultant and off to PR and CT scan ASAP. Could be a candidate for LVRS. Anyone had this op? C
Dee233
in
Lung Conditions Community Forum
8 years ago
Lung transplant referral 1st appointment
Two weeks ago my consultant told me that my % had dropped 10% to just below 30%. That my ct scan was clear but copd and my echocardiogram was clear but I wasn't suitable for coils. That because I haven't smoked for 3yrs I thought I was alpha 1 antitrypsin deficiency person because no control even on
Two weeks ago my consultant told me that my % had dropped 10% to just below 30%. That my ct scan was clear but copd and my echocardiogram was clear but I wasn't suitable for coils. That because I haven't smoked for 3yrs I thought I was alpha 1 antitrypsin deficiency person because no control even on
1hopefuture
in
Lung Conditions Community Forum
8 years ago
Health and weight problem
hi all I have beened depressed for 4 years and I have Alpha 1 antitrypsin deficienicy and COPD .Fibromyalgia and other health problems every time I go to the doctors and the hosipital everyone keeps saying lose weight which I do find it very hard to do I cannot walk far as I am always out of breath all
hi all I have beened depressed for 4 years and I have Alpha 1 antitrypsin deficienicy and COPD .Fibromyalgia and other health problems every time I go to the doctors and the hosipital everyone keeps saying lose weight which I do find it very hard to do I cannot walk far as I am always out of breath all
Angels2810
in
Lung Conditions Community Forum
8 years ago
Vitamin A
Good morning Everyone, Since I started working at BLF in 2009 we have regularly received enquiries about a trial from back in 2006. The trial, as reported in the Daily Mail, was to develop a drug 'to make damaged lungs regrow' The statement below was released at the time, but since this we have heard
Good morning Everyone, Since I started working at BLF in 2009 we have regularly received enquiries about a trial from back in 2006. The trial, as reported in the Daily Mail, was to develop a drug 'to make damaged lungs regrow' The statement below was released at the time, but since this we have heard
Biddy_ALUK
British Lung Foundation
in
Lung Conditions Community Forum
9 years ago
10 Myths and Facts About COPD
The sad fact is COPD is the fourth leading cause of death in the U.S. after heart disease, cancer, and stroke. It turns out your lungs are a precious resource —just like your heart—and need to be protected throughout your life. Just like heart disease, COPD can be silent for many years, until it’s nearly
The sad fact is COPD is the fourth leading cause of death in the U.S. after heart disease, cancer, and stroke. It turns out your lungs are a precious resource —just like your heart—and need to be protected throughout your life. Just like heart disease, COPD can be silent for many years, until it’s nearly
JimmySlover
in
Lung Conditions Community Forum
9 years ago
Panniculitis (& Alpha 1 antitrypsin deficiency)
I am looking to connect with others who have or have had panniculitis. Mine is caused by an Alpha 1 antitrypsin deficiency. I can find little information about it or others who have been affected by this as it seems to be very rare.
I am looking to connect with others who have or have had panniculitis. Mine is caused by an Alpha 1 antitrypsin deficiency. I can find little information about it or others who have been affected by this as it seems to be very rare.
Quietspace
in
MY SKIN
9 years ago
Just a thought...........
Has anyone looked into the possibility of having an Alpha 1 Anti-trypsin deficiency as a possible link to aspergillus etc? I'm being tested for it next week (its a simple blood test).
Has anyone looked into the possibility of having an Alpha 1 Anti-trypsin deficiency as a possible link to aspergillus etc? I'm being tested for it next week (its a simple blood test).
Karispitit
in
Fungal Infection Trust
9 years ago
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