[SurferGirl]

Interesting study, but more research needs to be done. The NIH, University of Texas Southwest, Johns Hopkins, National Jewish an Vanderbilt are doing some research on Familial PF to include Telomere sshortening.  Hopefully we will see more trials look at gene therapy in the future. https://www.ncbi.nlm.nih.gov/books/NBK1230/

[Charlene Marshall]

Hi SurferGirl,

Thanks so much for joining the PF forums and contributing to this topic! I agree with you that more research needs to be done, and I do hope the researchers who published this article continue their work. I’ll read more about the research you mentioned above, I’m glad you shared that link. Are they looking at the genetics within family links that might cause Telomere shortening? I’ll definitely have a read on the link you shared, I just haven’t yet so I apologize if my question is explained in the article above.

Are you aware of any research being conducted on Telomeres for patients with IPF? I would find it really interesting to examine the genetic and environmental factors of those who have IPF to see if there is any commonalities that might be responsible for Telomere shortening. I know an idiopathic diagnosis is used when there are no known factors to cause the disease, I just have a hard time believing / accepting that this disease “just happens”. With all the wonderful researchers and physicians out there, I know some day we will understand more about the causes of PF/IPF.
Thanks for sharing!

Charlene

[Deleted User]

See below for more information on the cause of short telomers.   The only reason I know about this is because my doc had me tested.  She is an awesome doctor!  The test isn’t cheap, I have no idea how much it cost, so they don’t do it on everyone.  In my case the test came up negative.

 

One risk for telomere shortening – Telomere Syndromes and Dyskeratosis Congenita:
https://www.hopkinsmedicine.org/kimmel_cancer_center/centers/bone_marrow_failure_disorders/telomere_syndromes.html

[Charlene Marshall]

Hi Alex,

Thank you so much for sharing this link! I am actually really fascinated by it, and I’m going to send you a private message to explain more about why. I am actually starting to see a bit of a link between another health challenge that has come up for me, and the telomere shortening that has obviously happened in my genes to cause the development of IPF. When you have a moment, please check your private messages 🙂

Your Doctor does sound amazing, and I am really glad she conducted this test on you to help increase your understanding. When you say it came up negative, do you mean you didn’t have the condition Dyskeratosis Congenita as the cause of the telomere shortening?

Just recently, I have had a new health concern that unfortunately includes my bone marrow so this is really informative information! I’m going to take it forward to my Doctor, thank you so much for sharing it.

Charlene

[Terry Mcloughlin]

 

This is an article that suggests gene mutations resulting in short telomere length and can be linked to familial IPF and Bone Marrow failure.

http://err.ersjournals.com/content/errev/26/144/160122.full.pdf

[Charlene Marshall]

Hi Terry,

Thank you so much for posting and sharing this article! I’ve just saved it, so I can print it off and read it more thoroughly. I am really interested in this, as I am unfortunately having issues with my bone marrow (not sure if I’ve shared this before) and am trying to figure out the link between this and my IPF. This article will likely shed some light on my understanding of this, thanks again! Were you searching for this information specifically, or had you just come across this link? I haven’t done a thorough search for information but hope to do that soon. I am just trying to compartmentalize all the information I take in and hear in my appointments.

I’m looking forward to reading this article though, thank you again for sharing Terry.

Warm regards,
Charlene

[gil]

Charlene, Terry,

Interesting article and subject, Telomere lengthening.  Last week, I saw my primary IPF doctor and he mentioned the telomere and IPF research others are doing as well as his team’s research. I should have paid more attention and I will ask him for more details but he is basically looking at the problem as a cell division/repair issue.   Apparently the new angle they are working on is based on the notion that the number of times cell division/repair is fixed so their research is aimed at triggering further cell division/repair after the biological fixed number is reached.  I am interested in research but that day I was focusing on my tests results and the implications of his work.  I mentioned that his work is related to the “fountain of youth” – if science can trigger generation of cells and telomeres then you are talking about extending life.  The doctor smiled and said yes, that was an implication but the current focus is on treating IPF.  I will get more information the next time I see him.

[Charlene Marshall]

Hey Gil,

Yes, this is definitely a topic area that I want to learn more about as well. I’m so glad to hear that research is being done in multiple centres on this topic, and I hope it produces some good results. So many incredibly smart and talents doctors and researchers are turning (or have turned) their focus to IPF and I am so grateful for this!

I’d be curious to hear more when you see your doctor next. Please do report back for us 🙂

Take care,
Charlene