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Were you born prematurely and have COPD?

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Somya.P

Community manager

06/11/2024 at 2:42 PM

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Somya.P

Community manager

Last activity on 12/21/2024 at 12:52 AM

Joined in 2023

432 comments posted | 10 in the COPD Forum

16 of their responses were helpful to members

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Hello everyone,

How are you doing today? 😊

I'm reaching out to invite members who were born prematurely and are living with Asthma and/or Chronic Obstructive Pulmonary Disease (COPD) to participate in an important survey. The aim of this survey is to better understand patient awareness about their preterm status and its influence on the development and management of respiratory diseases. 🫁

Why should you participate?

Your insights will help us to:

Understand the connection between preterm birth and respiratory conditions. 💡
Improve patient care and management strategies. 🧑‍⚕️
Contribute to scientific research that can enhance quality of life for individuals with respiratory diseases. 🔍

How will your information be used?

Your responses will be retained for up to 2 months.
The information collected will be shared anonymously and in aggregate form.
Aggregated results will be shared with Chiesi, a pharmaceutical company, patient advocacy and support organizations, healthcare professionals, and may be presented at scientific congresses and in publications.

What are your rights?

You have the right to access, modify, and oppose the processing of your data according to current laws. For more details, please read the Information and Consent Notice .

Participation is voluntary. By clicking on the “Start” button , you confirm your willingness to participate and give explicit consent to have your personal data collected and processed as described.

You will be requested to answer one questionnaire (you can stop the survey at any moment and come back where you stopped) estimated to take around 20 minutes to complete.

Ready to Participate?

👇 Click on the link below to start the survey. 👇

Patient journey of preterm born people with respiratory disorders

Thank you in advance for your valuable contribution! 💫

Somya from the Carenity team 🌼

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Somya.P

Community manager

Edited on 06/11/2024 at 2:52 PM

Good advisor

Somya.P

Community manager

Last activity on 12/21/2024 at 12:52 AM

Joined in 2023

432 comments posted | 10 in the COPD Forum

16 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend

View profileView Add a friendAdd Write

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Somya from the Carenity team

Were you born prematurely and have COPD? https://www.carenity.us/forum/copd/living-with-copd/were-you-born-prematurely-and-have-copd-5794 2024-06-11 14:49:47

Members are also commenting on...

CarolSchmidt

12/21/2020 at 10:35 PM

@KathyA‍, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.

Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!

She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!

Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.

The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.

There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.

Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)

I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope you have a wonderful reunion!

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cbholder3

12/02/2022 at 3:21 PM

@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.

GSKForYou | GSK Patient Assistance Program

Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.

See the best comment

CarolSchmidt

12/21/2020 at 10:35 PM

See the best comment

cbholder3

12/02/2022 at 3:21 PM

GSKForYou | GSK Patient Assistance Program

Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.

See the best comment

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Were you born prematurely and have COPD?

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