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Forum Home > General Discussion > What Do You Want To See In Canada For Sarcoidosis?

Melany
Site Owner
Posts: 22

I would like to know what concerns you most here in Canada about Sarcoidosis, if it would be the lack of knowledge or lack of resources? Please let us know what your thoughts are!

Stay strong and positive!

January 19, 2012 at 4:16 PM Flag Quote & Reply

Rachel
Member
Posts: 5

There is definitely a lack of knowledge about sarcoidosis, here in Canada and all over the world.  The lack of knowledge about childhood sarcoidosis is even greater.    If we take for example diabetes, we know there are two types, such as type 1 (formerly known as juvenile diabetes) and type II (formerly known as adult-onset diabetes).   Both types are different.

Because there is a huge difference between early-onset sarcoidosis (usually found in young children) and classic sarcoidosis, such as the pattern and different organ involvement, we hope there will be a distinction between the two one day (like diabetes) because it is important that doctors be able to make the difference between the two so they can make the proper diagnosis.

January 30, 2012 at 10:05 AM Flag Quote & Reply

Dawn Smith
Member
Posts: 8

I agree, Rachel, there is definately a difference between the two. 

I think we need to see a list of recommended doctors in Canada - those knowledgeable of the disease and open to the opinions of those of us who know the disease and our bodies.


January 30, 2012 at 11:23 PM Flag Quote & Reply

Melany
Site Owner
Posts: 22

One of our goals is to bring this disease to light for everyone including medical professionals who also need better resources and research. I have great faith that as Canadian's who have longed for this support, research and resources we will prevail.

--

Melany Sealy

January 31, 2012 at 11:40 AM Flag Quote & Reply

Pat H.
Member
Posts: 3

I wish you all luck with this--we may be a bit ahead of you down here, but not much.  Actually, before I started seeing my current MD, I was getting most of my information from Respiratory Therapists.  Every 3 months I either get PFT tests or a CAT Scan (lungs/head).  During the PFT tests, while I waited between tests, I asked questions.  (That's how I found out that the lungs  become rigid as the disease progresses.)  No wonder I can't take a deep breath--but now I know.  I have never seen that written in any literature about Sarcoidosis.  My MDs' nurse and I have become close friends--another great source of information.  If she doesn't know the answer, she'll find it and call me.  She is worth her weight in GOLD.  Back in 1991 when I was first diagnosed, there was nothing to be found.  Guess that's where you are now.  Let me know if I can help in any way.

February 4, 2012 at 8:07 AM Flag Quote & Reply

Melany
Site Owner
Posts: 22

Thank You Pat as like I said we all suffer and it is frustrating when answers seem so far away. I have spoke with some great people and I am starting a nation wide information distribution process right now getting pamphlets in every medical facility here. I know that if this disease was better known and information was easier to access it would be helpful in gaining the support to find the cure! My new saying is "Say It Loud And Say It Proud" as Canadian's will start getting more help and information soon!

February 4, 2012 at 10:20 AM Flag Quote & Reply

Gilles
Member
Posts: 2

Hello Melany and all fellow SarcKids :)

I have a scientific background and since my body "decided" to have some fun with unusual manifestations of Sarc, I have read a LOT of scientific articles (even had to pay a fair amount of money for some) over the past year-and-a-half and indeed, I had to do so, because most professionnals know almost nothing about Sarc, or - as you wisely stated in the petition - perceive that Sarc is purely a lung disease. Many MDs see the whole thing as extremely benign : pred and patience and you'll be fine in 2 years. Sarc patients have to learn to own their medical data and understand it, medical staff have to increase their knowledge of it and the pamphlets are a great idea. Also, especially for patients with awkward manifestations, "someone" has to help them go through the system (and frustrations) when the pulmonologist is not involved. Many thanks for what you are doing, we will say it loud along with you !

Cheers !

--

______________________________________

- Gilles

"Be, believe, belong... " and I will quote Jack

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic"

February 20, 2012 at 12:47 PM Flag Quote & Reply

wanda
Member
Posts: 11

i would love to see group,s meeting,s weekly...great quots from all of you guy,s ..:/

--

;) wanda 

February 26, 2012 at 8:25 PM Flag Quote & Reply

Heather
Member
Posts: 1

I need to find a good sarc doctor in my area.  I'm tired of getting the run-around by the various specialists I get sent to.  The basic response is that if I don't have nodules in my lungs, my episodes aren't sarcoidosis.  It doesn't matter that I have chest pain and pressure and difficulty breathing.  I am also suffering vertigo, dizziness, headaches, tinnitis, ear pressure (both ears), joint pain, back pain, etc.  I did have nodules in my lungs liver and spleen in 2004 and that was when I was diagnosed.  Previous to that, I had scar sarcoidosis and major flares in my ankles and knees.  Despite that and the fact that there was no lung involvement, I still have trouble with the doctors here.  


I am in Regina.  If anyone knows of a good sarc doctor in this area, I would greatly appreciate the assist.  

March 2, 2012 at 11:12 PM Flag Quote & Reply

Dawn Smith
Member
Posts: 8

Another thing to keep in mind about being sick in Canada is that our healthcare has a different approach to the American style of healthcare. In the USA, as long as you have insurance, they will test you to death to find out what is wrong with you. In Canada, doctors seem to be a little more complacent and will not test as much as required to get an accurate diagnosis. It took me years to finally get my doctor to send me to a dermatologist for my shins. When I talked to the dermatologist, I told him that I had sarcoidosis for 11 years and that I figured that is what was on my legs. When I got the biopsy results, he said had told his assistant to tell me that, yes, I knew what was wrong.  Can be so frustrating sometimes.

--

Dawn

March 15, 2012 at 5:33 PM Flag Quote & Reply

A Crock of Schmidt
Member
Posts: 6

Dawn Smith at March 15, 2012 at 5:33 PM

Another thing to keep in mind about being sick in Canada is that our healthcare has a different approach to the American style of healthcare. In the USA, as long as you have insurance, they will test you to death to find out what is wrong with you. In Canada, doctors seem to be a little more complacent and will not test as much as required to get an accurate diagnosis. It took me years to finally get my doctor to send me to a dermatologist for my shins. When I talked to the dermatologist, I told him that I had sarcoidosis for 11 years and that I figured that is what was on my legs. When I got the biopsy results, he said had told his assistant to tell me that, yes, I knew what was wrong.  Can be so frustrating sometimes.

"In the USA, as long as you have insurance, they will test you to death to find out what is wrong with you. In Canada, doctors seem to be a little more complacent and will not test as much as required to get an accurate diagnosis."

 

With all do respect, more is not necessarily better. My experience in Canada is quite the opposite of what you describe. I was getting so sick and tired of seeing doctors and having tests all to learn nothing. I think it's dangerous to generalize by nation. Each doctor is different; USA or Canada. The number of test don't necessarily make for better treatment. And, frankly, getting an accurate diagnosis sometimes doesn't change anything. I found that realization very frustrating in my own personal experience. Didn't matter what name they put to my symptoms, the results, potential for resolution, and treatment didn't change. Sigh.

 

March 22, 2012 at 3:23 PM Flag Quote & Reply

Rachel
Member
Posts: 5

The opposite also happened to us. In my daughter's case, her diagnosis happened within a very short period. When her symptoms began, we were referred to so many specialists, and her family doctor did not give up until we found out what she had. When she was referred in rheumatology (pediatric), we were told the wait time could take up to 6 months, if not longer. Within 3 days of her referral, the rheumatology clinic called us and she was seen within a week. That was absolutely amazing! The rheumatology team she sees and the care she gets are both incredible!! Not all of my daughter's experiences with doctors were the best, but I agree with Hazzard, each doctor is different. It is too bad that so many people are not treated promptly, and hopefully, by bringing awareness, that will change in the future.

March 28, 2012 at 8:39 AM Flag Quote & Reply

Virginia
Member
Posts: 1

The doctors need a lot more understanding of this disease. I've been to two of the hospitals in Toronto and in neither place have the doctors had the knowledge of what the right  tests to use to find out what is going on.

It took a very long time to get a diagnosis from the first time I said to my doctor that I felt like a little man was sitting on my chest. He at first had diagnosed me with RA and asthma but the inhalers never, ever helped me to breathe any better (or differently for that matter).  The sun had given me a "rash" ever since I was young.

The very last example of no one knowing what to do with me is when I ended up in the ER because of squeezing chest pain and difficulty breathing. The ER and internal medicine docs had decided that it was probably epicarditis caused by all the inflammation in my lungs due to sarcoidosis. They spent a long time trying to find a doctor that knew anything about sarcoidosis to no avail. The EKG was showing some problems with the way my heart was beating.

My pulmonologist has stated that my lungs are stable for the past few years but that stability is not good. Still have stage 4 with lymph nodes still inflammed plus there is so much interference with cloudy lungs, you can barely see the outline of my heart.

The doctors need education.




April 4, 2012 at 4:09 PM Flag Quote & Reply

Michelle
Member
Posts: 3
Virginia I hope you feel better. I too get the little man on my chest feeling when I have a flair up. Also the skin rash on my arms though. It almost makes me crazy it itches so bad. I haven't found anything to stop the itch. Anyone with any ideas?
April 6, 2012 at 10:30 PM Flag Quote & Reply

Dawn Smith
Member
Posts: 8

Michelle, I use Reactin when my skin gets really itchy. It usually helps within an hour. I also using a steroid cream on my legs to help clear them up. I've had an on-again/off-again rash on my back for years and the antihistamin helped with that too. It took years for my Calgary family doctor to send me to a dermotologist for my legs because he was not the one who made the sarcoidosis diagnosis in 2001 (I was in Winnipeg then),. Until the biopsy came back positive last year on my legs, I don't think he EVER thought I'd ever had sarcoid. I now have a new doctor who is wonderful and dare I say, sometimes too thorough as well but everything seems stable right now.

--

Dawn

April 14, 2012 at 9:27 AM Flag Quote & Reply

Michelle
Member
Posts: 3

Dawn it sounds like you are managing very well.  I have tried antihistamines and steroid cream.  Nothing helps.  I have learnt to live with it, but it can be embarrassing when I am in front of a crowd and start itching. take care

April 20, 2012 at 9:48 PM Flag Quote & Reply

Paul M
Member
Posts: 9

Well I'm truly glad to see a solid effort from someone to put together a Canadian Organization of this kind....hats off to Melany! I'm a Newbe to the site and have been recently diagnosed with Sarcoidosis (3 months ago) and am waiting to see a Pulmonary Specialist in August. In the mean time I've been doing a few things on my own to help my cause. Before I tell you about that, I want to say that my diagnosis was quickly guessed by my doctor after a CT scan and confirmed after a biopsy. At first I did not believe that I was symptomatic, but in retrospect I think the lack of immune system (I was catching too many flu like symptons) in the last few years was probably a tell tale sign. In January, while completing an annual physical, my doctor noticed some shadowing in my lungs and quickly sent me for a CT Scan (then specialist and biopsy). From what I've read, I think I have Stage 4 Sarcoidosis and this should NOT be confused with Cancer Staging! Whatever the case, I embarked on changing some things that I felt were clearly helpful prior to any Medical treatment... 1) Remove all foods and liquids that are on the Sarcs "avoid list" 2) Review my Blood work with my Doctor to determine what was out of wack - delete other allowed foods that add to already high levels of blood categories ( since my Calcium levels are a bit high, I do not have ANY Calcium food products) 3) Add supplements for all Blood category deficiencies (I was actually a bit low in Vitamin D!) 4) From the balance of the "allowed foods", prioritize those that contribute to anti-oxidant, anti-inflamatory and immune system boost. 5) Add supplements for anti-inflamitory and immune system boost as well. 6) Exercise with Cardiovascular being the priority. While I've done this for almost three months now, I don't know if this will be enough to diminish my Sarcs over time, but I do know that these are fundamental things we should do. (YES, I feel much better too!) I've also decided to take 2 ounces of "Essiac Tea" which is a gentle detox herb liquid Lymphoma patients consume as well as trying to go Gluten Free lately. I'm hoping I can avoid any medical treatment by helping my body naturally beat this thing and hopefilly I have the luxury of doing just that. With no Cure in sight, treatments are limited. It's not the Doctors' fault, its the lack of research and information sharing that needs to catch up. Initiatives like this site, go a long way to stay the course. Thanks for the opportunity to launch my first post. All the best to each one of you, Paul

June 17, 2012 at 1:10 AM Flag Quote & Reply

Paul M
Member
Posts: 9
July 13, 2012 at 8:14 AM Flag Quote & Reply

Paul M
Member
Posts: 9

Its been a while since my last post and I'm a little disappointed to see the lack of activity on this site.

 

I'm grateful for the links that have pointed me to other resources since I've gained much more knowledge of Sarcoidosis and what I can do to help myslf, but we need to collect this information on THIS site!

 

Even the "best" forums around don't seem to organize reference information for new patients AND Doctors. I believe most of us know that we need to educate our physicians to receive efficient treatment, In order to do this, we need to continue to educate ourselves and centralize this education in an organized fashion,

 

I've been searching and filtering all sorts of info from all over the world so that I can prepare myself for my pulmonary visit (in the next few weeks) and I'm fustrated to know that this information has existed in Sarc's forums, but buried in posts that were never flagged (as a "sticky") or indexed for quick access.

 

I'm going to make an effort to collect some fundamental information and post, but I would ask the moderaters to "filter" information and collect the posts of merit in a section with some appropriate label (i.e general diet, treatments, supplements, etc) as more usefull updates appear.

 

I would like to see this web site differentiate itself from the others and make it the "go to" Candian site for Awareness and Research INFORMATION!

 

Just my 2 cents...

July 13, 2012 at 8:48 AM Flag Quote & Reply

roger
Member
Posts: 4

I wish it was more known to doctors, It would be nice to find a doctor that doesn't conform to the norm that

"it usually clears it self up in 18 months or so"

What about those of us that it has gotten worse not better?

July 16, 2012 at 12:05 AM Flag Quote & Reply

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