So I was diagnosed with this when I got sick in the hospital at age 3, and now I'm 21 and a college student in NJ. I've discovered how limited I may be for the rest of my life, and have been researching extensively into stem cell therapy and lung regeneration- there are two clinics in particular, has anyone heard of Stem.MD and Lung Institute, and has any knowledge on it? I also have a ton of articles saved up regarding said topics, if anyone is interested I would be more than happy to share. I can be reached via message!
Is anyone "young" (under 30 )and grew... - British Lung Foun...
Hi I am in no way young...but I have had bronch since I was a baby...had both lower lobes out when I was 15 & 16... and I can emphasize with your worries. But now I am very old...and although now at severe stage 3 COPD as well as the bronch & emphysema ...the prognosis for you is so much better.
The only treatment I have ever had through all the years was a single course of amoxicillin every time I got a chest infection ( they never gave emergency packs at home or more than a single course out in those days)
and I have had a very full and active life, not missing out on anything, until recent years...where my lung function has deteriorated, and now finally I am under a consultant....and take puffers, and meds , and all sorts
There is now SO MUCH research going on into respiratory matters...I feel positive that very very soon, there will be some big moves in the stem cell lung regeneration research programs that are going on...
You are doing well with your own research.....I am sure you will be OK
But even with NO real help from the doctors...I have lived a long life with Broch, it is not a death sentence....I did not know how to clear my lungs of gunk, or how to keep myself healthy, you now have that knowledge, if you follow the rules, you should live a very very long time...the trick is to arrive into old age with as healthy lungs as you can
There are some very young here, we are all ages here. I can think of one recent member, Impy but there are others.
Take care, nice positive post on whole life experience from Sohara there.
It would be nice if a few of the very young could start their own chat/support group on here. xxx
PS I'm sending you a private message right now, click in the green bar above to read ASAP x
Hi, why don't you put a new post up, it doesn't have to be long. Just introduce yourself, your diagnosis, age and that you're feeling down.
You'll get lots of support - members may not see you here as your reply is to a by old post - there are so many of us who'll understand feeling down. Wishing you all the best and looking forward to your post xxx
There are no effective "stem cell" or "regenerative" therapies at this time for any lung disease. Anyone who tells you otherwise is looking to take your money or is ignorant to the latest medical technology. That is not to say that there won't be in the future as this is an area of intense research however at the moment us unfortunate pulmonary patients are stuck with bronchodialators, steroids, and in worst cases oxygen and lung transplants. If you want reliable information search resources from government or nonprofit institutions such as nih.gov, clinicaltrials.gov, or lung.org. Medscape.com is also an excellent resource directed towards medical professionals. You can find experts that specialize in your particular disease by searching expertscape.com. From there you can reference the latest publications from world renown leading experts and see exactly where things are heading. There is talk of regenerative therapies for lung diseases however in all likelihoods anything significant is at least a decade away. If the doctors at the clinics you mentioned really could do what they preach they would be billionaires, would no longer have the need or interest to treat patients individually, and would be highly recognized by the medical community. Search for any academic publications with them listed as an author on google scholar and you will likely find none because they are not researching science but are selling hope, without any real possibility for a cure, to the sick and desperate. I'm sorry, I wish things were different as I too have lung issues however t this is the truth. Sad.
I do not have bronchiectasis or BOOP however I am highly educated and very up to date on the latest medical research in obstructive lung diseases. If you are interested in contacting me please feel free to do so.
Just read your post. I have had Bronchiectasis since I was 10 years of age and am now the ripe old age of 71! I have learnt a few things along the way you may be interested in hearing.
1. You are young enough to choose where to live. Wherever you live, pick a warm dry climate with humidity no higher than 50%. High humidity and damp weather is a killer.
2. Look after yourself. No late nights. Get plenty of rest and plenty of exercise,
3. Eat a good diet. No going on diets!
4.Stay out of crowded places, I.e. Movie theaters and anywhere there are crowds.
5. Don't go out in rain.
6. Eat very scant amounts of cheese, milk, bananas, chocolate.
Of all that I have learned in the past 70 years I think living in a dry climate is the best advice I can give you, I have lived in a number of countries throughout my life and have been asymptomatic of Bronchiectasis when I lived for any length of time in a dry, warm country.
I had two lobes removed from my lungs when I was 12 years old and depending on how severe your disease is, if surgery is offered to you, I would take it, It did not stop me skiing in my twenties and thirties so that is how well I felt,
Stay well and don't let it hold you back with whatever you want to do.
Hey there, my daughter is 7. She had repeated pneumonias since the age of 3 and eventually got diagnosed with Bronchiectasis last year. She seems to get a couple of months off in the summer and then as soon as she is back at school, bam ... viruses start and then chest infections. She gets ATB and daily physiotherapy from me and Mum and we take her immediately to A&E as advised by her consultant when she gets a sniffle, for a cough swab. A&E docs are still pretty clueless about what Bronchiectasis is and look at us as though we are stupid for taking a chid with a viral infection to hospital. Last 2 times we went to A&E we got kicked out, only to reappear hours later. I am pretty pessimistic about the long term quality of life for my daughter, so if anyone can reassure, it would be welcome! Also just looking at whether there are stem cell options.