If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa Moreno-Dickinson CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com My son has Blau/EOS(Early On-Set Sarcoidosis)

HELLO, I am want so much to connect with other that area dealing with an Auto immune disease, mine happens to be sarcoidosis. I recenlty started having more infections and worsening breathing problems,and need to connect to those who understand a bit better than those whol have no idea what its like to be so sick, even myself. I hope your son is doing well, and I hope you will write. thanks so much Amy

Amy, I am sorry you are having more symptoms/findings. I do understand how you are feeling. How long have you been dx with sarcoidosis? Have you visited the stop sarcoidosis foundation? You are not alone. Lisa Thanks for asking about my son Brody, He is better on Anakinra however, it is a day to day fight! Please feel free to contact me anytime.

Hi Lisa, I was diagnosed 15 years ago, but because of so many negative things in my life, (very LONG stories !) I never concentrated on taking care of myself, and have just really admitted how sick I really am. I am in a good situation now though, able to make decisions that are good for me, and I am not being pressured or made to feel bad because I am sick. I have a terrible time with infection and just got out of the hospital on the 5th after a weeks stay, and have been taken out of wor, and put on oxygen ... Dr.'s want me to consider some different avenues, including revisting the option of a double lung transplant ... that is why I am doing so much research and weight my pro's and cons ... and I need others to talk too. So glad I found you. I hope we can become help for each other. I will share more soon. I know my faith is strong and God has a plan and will see me through this,, I know there is an answer, and God has a plan. I am looking forward to sharing. Thanks Lisa Amy

Good Morning Amy, I am glad you are in a good place right now, and can concentrate on your health. I am glad you have reached out, I do want you to join the sarcoidosis community as well. Also, have you heard of FSR(Foundation for Sarcoidosis Research) they are located in Chicago,IL. 866.368-KISS I suggest FSR to you, so you have others to connect to that might also have to consider different avenues. Do you mind me asking how old you are? Do you have an overlap of dx or is Sarcoidosis your ddx(diagnosis)? Have a blessed day, Lisa

Hello Lisa It's so nice to get messages I love it. I did join the sarcoidosis section it just seems no one has logged in in a very long time. I will keep checking. I don't you asking my age, I am 46, but ha ve spent the last 15 years NOT takingu care of me. I also have COPD and Bronchitis ... I get lung infections very easily. and now I am on oxygen 24/7 thats a lot to get used to. I live in New York, about an hour from Buffalo...its cold and snowy here today. You have a Blessed Day as well Talk soon Amy