Thursday, February 2, 2017

7 Years in "Remission" and it's back?

When reading and researching sarcoidosis back in 2008-2010 my findings were that a good percentage of people who suffer from sarcoidosis go into remission after about 2 years. A very small percentage ever had it returned or that it was highly unlikely after having it for the short bout that sarcoid would return. I'll mention that those outside of this suffer from sarcoidosis their whole lives.

I have been having nasal and sinus issues that were thought to have stemmed from my allergies for the last 5 years or so. They have been getting worst. I changed ENT doctor and this new lady upon learning about my history with sarcoids was convinced that's what was going on again. She urged me to see a pulmonologist and to get an ACE test to see where my levels are.

I saw her for about a year and change before I started to get sick of hearing it was sarcoids. She even went ahead and said, "if it looks like a duck and quacks like one then it's probably a duck" I felt that this was an easy way out and it would be harder to find the real reason for my sinus issues.

This really pissed me off and I sought out another doctor. Saw him for the first time a month ago and he also took the sarcoid route claiming he saw granulomas in my nose. He ordered an ACE test which today i find the results. My ACE levels are at 74.

ACE stands for Angiotensin Converting Enzyme and converts angiotensin 1 to angiotensin 2.

typical ace level in the blood is 8 to 53. Usually in a sarcoid patient the level is on the high side. In my case the test came back 74.

Usually high is an indicator that the disease is active but as I have said before there is no definitive diagnosis for sarcoidsosis and it's a sort process of elimination.

either way stay tuned new adventures to come. Please feel free to comment on your ace levels and experience.

Sarcoidosis in 2012

Not sure where sarcoidosis is in 2012 as far as research and delopement for treatment goes but I can say I have noticed 2 things. An increase in traffic on this blog and a ton of more blogs. Both are great because it can only mean increased awareness. At first I thought it meant more people with sarc but then this brain of mine got a volt of smartness that brought me to the conclusion people dealing with this horrid disease have always been around it's just that they are talking about it more.

Monday, September 24, 2012

Bernie Mac Speaking about Sarcoidosis in a Radio Interview 2009

I never came across this till now but though I would share an article on Bernie speaking of sarcoidosis.

Bernie Mac Speaks Candidly About Sarcoidosis

"What do Floyd Mayweather Sr., Tisha Campbell-Martin, Evander Holyfield, Bill Russell and Angie Stone have in common? They are all victims of Sarcoidosis.
Bernie McCain addresses a disease that effects many in the African American community but is little discussed. Sarcoidosis is a disease due to inflammation. The disease is characterized by the presence of granulomas, small areas of inflamed cells. They can be either inside the body or on the body’s exterior, appearing as sores on the face or shins. This afternoon at 5 pm, Bernie will have in studio Kim Carrie Grant to talk about how she deals with Sarcoidosis and on our News Line, Dr. Gavin Henry of St. Agnes Hospital in Baltimore".
Not the biggest or best article out there but the writer made a great attempt to spread awareness. Unfortunately it's not done enough. 

Tuesday, April 17, 2012

April is National Sarcoidosis Awareness Month

The month of April was declared National Sarcoidosis Awareness Month by US Congress in 2008. Many organizations are observing this and it's a great month t participate in walks, garage sales and many other ways to raise funds for research. 

Here is an article I read this morning about April being Sarcoid month and how Social Security does not yet lists sarcoidosis.

Also please read this really great article on the Huffington Post

Making a Difference: The World of Giving -- Sarcoidosis Awareness Month

And lastly click on the Link to go the FSR site and find activities to participate in. 

Monday, April 16, 2012

Autoimmune Walk for a Cure

I just received a pamphlet in the mail on the annual Autoimmune Walk for a Cure. There is one in NYC for those of us in the metro area. I'm wondering if anyone is interested putting together a team to walk this thing and raise money for this cause.

Although I no longer suffer from sarcoidosis I am forever linked to autoimmune diseases where ever I happen to look.

Let's start with my brother, he has suffered from ulcerative colitis almost his whole life. I have a cousin who suffers from chrons disease. My mother-in-law (RIP) suffered from chrons. My brother-in-law (RIP) also suffered from chrons and who know how many others I may not know about.

I believe this organization is the key because it's every disease united. That means more money for research. This is one of those find a cure for one you may have them for all. Even if science can find a way to control inflammation long term without shutting down your immune system and taking steroids then at least millions of people can live a little better.

Let me know if you live in the tri state area and are interested in walking and raising money for this worthy cause


Sunday, August 14, 2011

The Bernie Mac Foundation

I haven't been on the site for awhile but noticed they revamp and it looks great.

Bernie Mac Foundation

Love the video and the About Bernie section.

Please check it out and donate if you can.

Get your TeeGee sarcoidosis awareness shirts here!

It's been awhile but The Gardener is at it again. Just wanted to let you all know shirts are still available and new hilarious ones added.

TeeGee has one of the most astute and warm sense of humor I have ever encountered and a hero in my book for doing so much to help spread awareness.

Get your shirts right here

The Gardener's Sarcoidosis Awareness Workshop

And meet Capt Sarcoidosis Awareness and find out what a Snarkie Sarckie  is.

A little bit about the Gardener. (Copied and pasted from the shirt site)

theGardener is the founder of the grassroots Snarky Sarkie© Campaign to increase world wide awareness of Sarcoidosis. theGardener is the creator of the comic strip Rabid Barking Lymph Nodes© the world's first Sarcoidosis comic. He is also the author of My Pet Demon: A Sarcoidosis Journal© featured on the Foundation for Sarcoidosis Research Stop Sarcoidosis Community web site. 

His journal, focusing on his own experiences with Sarcoidosis for over 20 years has a unique sarcastic twist and uplifting humorous tone. theGardener feels that humor is the best medicine and an effective way to convey a message and therein lies the core of the Snarky Sarkie© Sarcoidosis Awareness grassroots movement.

“ I am inspired by anyone who... in spite of tragedy or in the face of illness that is unfair and contrary, still throws a leg over the side of the bed and gets on with the business of living. That's guts and fortitude.” — theGardener

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United