Sarcoidosis And Me

 

National Sarcoidosis Organization

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Melany
Site Owner
Posts: 22

There are so many ways that sarcoidosis affects people and each story is different yet offers a great amount of information to others who are dealing with similar things. Have you been diagnosed with sarcoidosis which has involved your eyes and how are you being treated? Sarcoidosis is a complex and very frustrating disease as known to many, and that leads to challanges both with diagnosis and treatments.

May 30, 2012 at 10:02 PM Flag Quote & Reply

Kathy Speakman
Member
Posts: 1

Hi Melany...I am from Queensland Australia and have only just been diagnosed sith sarcoidosis. The first finding was in both my eyes after I complained to my optometrist about difficulties driving at night and that my sight had become hazy and had a "smoky" effect. He thought he saw something that looked "wrong" so sent me to an opthamologist. Only a couple of days ago I had a CT scan of my chest which has confirmed I have sarcoidosis in my lungs as well. My journey has only just started and I am still "joining the dots" with my random symptoms that are all adding up now. Feeling quite scared and bewildered. Have no idea what is in store for me now.

June 9, 2012 at 2:41 AM Flag Quote & Reply

Suzanne
Member
Posts: 3

Hi Kathy,

I'm wondering what has happened since your last post.  Did you have treatment for your eyes?  I've had sarcoid for a few years now - lungs and joints have been affected.  Seems it's now affecting my optic nerve. 

Thanks,   Suzanne


March 23, 2014 at 2:22 PM Flag Quote & Reply

Aholymess
Member
Posts: 4

I just joined this site and am fairly new to Sarcoidosis. I had never heard of this autoimmune disease until last May.

It affects, specifically, my lungs and both of my eyes. I'm just trying to figure things out and connect with others who experience the same type of issue, although this disease is unique to each of us.

I have an awesome supportive GP, an informed Opthamologist and wonderful Internist.  I am  activley having my lung wellness checks and feel that everythng that can be done is being done.  I look forward to meeting many of you, to share, discuss, listen and become informed .


Irene :~)

 

October 23, 2014 at 12:37 AM Flag Quote & Reply

Dawn Smith
Member
Posts: 8

Hi Irene, I'm sorry to hear of your diagnosis for sarcoidosis of the lungs and your eyes. It does sound like you have a wonderful team working with you. I have an awesome opthamologist as well and am fortunate enough to not have sarc in my eyes, but in my lungs and my skin. 

Most of us had never heard of Sarcoidosis before we were diagnosed either. I am actually starting to run into more people who do know what it is or at least who have heard it (at least here in Calgary). 

Please let us know if you have any questions or even have any suggestions for the site (I am on the board for the NSO). We would love to hear from you!

Take care!

--

Dawn

November 3, 2014 at 6:51 AM Flag Quote & Reply

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