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#PulmonaryHypertension

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Public
Lucilla Piccari

Please watch Sarah's story & other testimonies from on the journey to diagnosis of

During 8 long years of , she faced disbelief from doctors who told her she was "unfit" & "anxious", then a diagnosis of chronic fatigue sd, before a correct PH .

youtu.be/6UY__sr2mgk?si=jnPJJy

YouTubeSarah's story (subtitled)By Pulmonary Hypertension Association (PHA UK)
Public
Lucilla Piccari

Dear , carers and professionals interested in w , we hope to see you & talk about the disease, current & future research & treatments
This webinar is organised by the European Federation (www.eu-pff.org) and will see the participation of Steve Jones, Hall Skaara (phaeurope.org), Dr David Kiely (Sheffield, UK) and myself.
Please register here👉 us06web.zoom.us/webinar/regist
🗓 Monday 23 October 2023
⏰ 6 pm BST / 19:00 CET
See you there!! 🤗

ZoomWelcome! You are invited to join a webinar: EU-PFF Webinar: "Pulmonary Hypertension associated with interstitial lung disease (PH-ILD) - current and future treatments". After registering, you will receive a confirmation email about joining the webinar.The 4th session of a new series of monthly and free webinars for the pulmonary fibrosis community will take take place on October 23rd at 19:00 CET. Many Pulmonary Fibrosis patients develop pulmonary hypertension (PH), which can result in rapid worsening of symptoms and lower life expectancy. Dr Lucilla Piccari, Barcelona, Spain, Prof David Kiely, Sheffield, UK, and Hall Skaara, PHA Europe, will discuss what is known about PH-ILD, as well as current and potential treatments. The session will be moderated by Steve Jones, EU-PFF President. The 4th webinar will be held on: Oct 23rd 2023 | 19:00-20:00 CET | 18:00-19:00 BST | 1:00-2:00 PM Eastern Time The live webinar will be held in English. The recording will be released later with subtitles in various languages. This series of webinars are kindly supported by an unrestricted grant from Boehringer Ingelheim, Trevi Therapeutics, Chiesi Farmaceutici and the Roche Group. Data Policy: The data provided by you (name & email address) will be used exclusively to inform you about our activities, future events, our webinars and, if applicable, other events and projects relevant to the PF community, and will not be passed on to third parties under any circumstances. By registering for this webinar, you consent to these terms. Consent for use of your data for those purposes can be withdrawn any time by an email to secretariat@eu-pff.org.
Public
Kara Shallenberg

I just got an email from a #PulmonaryHypertension organization promising tips on what to eat and what to avoid, for people with my condition.

Newsflash! Eat fresh fruits, veggies, and whole grains! Avoid too much salt! WHO COULD HAVE GUESSED? WHAT GENIUS IS RESPONSIBLE?

Someone got paid to write that article and send that email.

(Oo I’m grumpy. Lol.)

Public
Kara Shallenberg

I did my lung exercises AND my stupid boring leg exercises for the first time since I got out of the hospital.

I have a hard time walking from the bedroom to the kitchen. Scary. If I remember right, I was this bad before I started physical therapy but improved quickly. Fingers crossed that happens again. I don’t want to go to a nursing home yet.

#ChronicIllness#PulmonaryHypertension#PAH
Public
Chandani DeZure, MD

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr

---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. is often associated with other such as , , idiopathic …
twitter.com/PHAssociation/stat

Public
Kara Shallenberg

I ran errands and ate a simply enormous cheese blintz. The Beloved Englishman is digging up some RF shielding material from his workshop so I can sew a protective pouch for my medication pump. This will tell us once and for all if the problem is RF interference or not.

Hypothesis: the CPAP machine was part of the problem, but there is some other source of RF as well. But only in bedroom at night 🙄

#Remunity#PulmonaryHypertension
Public
Kara Shallenberg

Good morning friends!

I think we’ve solved The Case of the Mysterious Nighttime Medication Pump False Alarms! It was Dave’s unused but plugged in CPAP machine phoning home with diagnostics at night.

We need a few more alarm-free nights to be certain, but all the clues add up perfectly. I’ll fill this post with hashtags for anyone else who has this problem and will also write a detailed blog post full of useful keywords.

#PulmonaryHypertension#PAH#Remunity
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