Posted , 4 users are following.
Hi everyone,
I am mum's carer and its nice to finally stumble across a forum relating to PPFE as most forum would be discussing about IPF on its own.
just thought I would reach out if there are anyone who has both IPF and PPFE?
It will be amazing to share experience together and also to know you are not alone out there 😃
take care and God bless you all
kind regards
siti
0 likes, 5 replies
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julie36573 siti5249
Posted
Hi Siti, this must be hard with your Mum having 2 fibrosis conditions My husband has PPFE only but wanted to check that you knew there was a Facebook group for PPFE & mist discussion happens there There is a public group & closed support group You need to email the admin to join the group. Lovely supportive people there. Best wishes as you face the future. Julie
siti5249 julie36573
Posted
Hi julie
nice to hear from you.
yes it is very hard and I did come across one group but it doesnt look like it is an active group?
unless it is a different group you are referring to?
do you mind linking me to the group please? my username is Siti Ismail.
or maybe you can copy ans paste the link here please.
thank you so much Julie and hope your husband is doing well despite his PPFE condition.
is he on any medication?
many thanks
siti
julie36573 siti5249
Posted
HI Siti, if you go to Facebook - assume you are a Facebook member - put in the search box Pleuroparechymal Fibrelastosis (PPFE) Closed Group You should find the group & will need to send an email asking to join. Claire may take a while to answer - she had 2 young children & lost her husband to PPFE 18 months ago . There are 38 members, all with PPFE or their partners suffer from it.
The other way would bebto become a Friend with me in Facebook & can then invite you to the group . To find me on Facebook, look for Julie Moore, in my picture I have a pink boa aroung my neck . I live in Brisbane & went to school at St. Leonards . Let me know how you go.
Very best wishes Julie
kateLinde siti5249
Posted
Hello Siti, We are happy you have found our little group - the most active group is as Julie said - on the closed PPFE facebook group. I sure hope you can find your way there because there is lots of discussions going on and people are very supportive of each other there. So sad your mum is experiencing these diseases, but it's so nice to have a group of people you can ask questions of or share your experiences. I also have two issues, the PPFE and then Bronchiectasis .
Just curious how did your mum get diagnosed? Did she have a biopsy?
Please do try to find us all on Facebook, it took me several tries to get on, but once I got on I was happy to find that group!
Kate
siti5249 kateLinde
Posted
hello kate
I am pleased to hear from you. Mum was initially diagnosed with IPF, it was quite obvious through CT scan- the honeycomb characteristics. Through the initial scan diagnosis of PPFE was not made as it wasnt as obvious on the scan but during the ct scan follow up - 6 months after initial diagnosis the PPFE characteristics were more prominent. the give away was mum lost tremendous weight within the 6 months of diagnosis- usually ipf patient dont lose weight that drastically.
respiratory specialist do not recommend doing biopsy as mum s condition might get worse after plus there isnt any treatment for PPFE. currently mum is ok ofev for slowing down the scarring due to ipf but dr s are hoping it will slow down the ppfe too.
thanks so much for sharing about the fb page on ppfe.
best wishes,
siti xx