Carmen Camacho , MA, LSW
@camachoc2000.bsky.social
Mental health Clinician , Rare Disease Advocate , patient educator. Received a double lung transplant May 27 due to the pulmonary fibrosis of Hermansky Pudlak syndrome.
😂😂😂😂 sure they is only a feeling if is set for you
March 30, 2025 at 8:58 AM
😂😂😂😂 sure they is only a feeling if is set for you
😂😂😂😂 ohhh is good when is for you!!!
March 20, 2025 at 9:50 AM
😂😂😂😂 ohhh is good when is for you!!!
Thank you i am working on it!! :)
February 3, 2025 at 2:24 PM
Thank you i am working on it!! :)
Sadly we are!!
February 3, 2025 at 1:17 AM
Sadly we are!!
U cam send you a link so at least you are in our group amd get you connected with the hps network! Is free and they have lots of good info
February 3, 2025 at 1:09 AM
U cam send you a link so at least you are in our group amd get you connected with the hps network! Is free and they have lots of good info
Wow !! So you are in Australia!! I am sorry I haven't answer you as I was in the hospital, I am working to get a lung transplant I have hps 1
February 3, 2025 at 1:08 AM
Wow !! So you are in Australia!! I am sorry I haven't answer you as I was in the hospital, I am working to get a lung transplant I have hps 1
Ohhh wow ! We have a group just for people with hps and a WhatsApp group! I can add you if you like. Now there are new findings for the HPS3.5 and 6 so it will be good for you to stay up to date! We also have a conference in NY thus coming April!!
January 29, 2025 at 9:24 AM
Ohhh wow ! We have a group just for people with hps and a WhatsApp group! I can add you if you like. Now there are new findings for the HPS3.5 and 6 so it will be good for you to stay up to date! We also have a conference in NY thus coming April!!
Hi!! I also have HPS, I have HPS 1 I am glad you got a diagnosis so you can take good care of yourself!! The HPS community is very welcoming and supportive!!
January 28, 2025 at 12:57 PM
Hi!! I also have HPS, I have HPS 1 I am glad you got a diagnosis so you can take good care of yourself!! The HPS community is very welcoming and supportive!!
need @UNOS to be able to have the communication they need to be able to work! I need the @NIH to have their scientists tell me the advances on my rare disease! I need the @FDA to keep us informed of dangers to all, especially immunocompromised individuals! This is going to far!!!
January 24, 2025 at 1:13 PM
need @UNOS to be able to have the communication they need to be able to work! I need the @NIH to have their scientists tell me the advances on my rare disease! I need the @FDA to keep us informed of dangers to all, especially immunocompromised individuals! This is going to far!!!
Terrible ,💔
December 17, 2024 at 12:05 PM
Terrible ,💔