Sarcoidosis And Me

 

National Sarcoidosis Organization

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Donation To The University Of Alberta

Posted by Melany on April 9, 2013 at 9:55 AM Comments comments (104)

Left To Right Back - Cheryl Gould, Dawn Smith, Tanya Saban, Dr. Beach, Front Left To Right - Tania Weisgerber and daughters Claire and Annika, Dr. Cherry and Melany Sealy.

 

 

On Monday, April 08, 2013, the National Sarcoidosis Organization presented a cheque for $13,000.00 to Dr. Nicola Cherry and Dr. Jerry Beach of the University of Alberta. The funds are in aid of their latest research project of investigating gene environment interactions in the etiology of Sarcoidosis. This is the largest study ever done of pulmonary Sarcoidosis.

The NSO is the only Canadian charitable organization, dedicated to raising public awareness and raising funds in support of Sarcoidosis research in Canada.

This donation was made in memory of Chad Weisgerber, who in May of 2012, died as a result of complications of neuro-sarcoidosis.

For more information on this and other events, or to learn more about Sarcoidosis, please visit our website at

www.nationalsarcoidosisorganization.com

Or contact:

Melany Sealy, President, National Sarcoidosis Organization Email: Nationalsarcoidosis@gmail.com

 

 

S.T.A.R Soldier - By Cindy O'Neil

Posted by Melany on March 29, 2013 at 6:20 PM Comments comments (0)

In Sudbury Ontario a young woman who has been diagnosed with pulmonary sarcoidosis was interviewed by Cindy O'Neil who is a singer/songwritter and publisher. They put together a podcast https://itunes.apple.com/ca/podcast/vocal-vibes-podcast-cindy/id579006999 as well as a YouTube video http://www.youtube.com/embed/4EfHxpbwjiY .

Please take a look as they were done very well. A big thank you goes out to Stephanie Hurst and Cindy O'Neil for these great productions about sarcoidosis.

*Note that the information on these productions were based on Stephanie's personal experience and knowledge obtained through other sources. Not all facts are acurate in that sarcoidosis does not just go away. Symptoms may subside or go into remission after a period of time for some patients, and others it may be chronic. Please note there are some resources at the National Sarcoidosis Organizations website for more research and facts if you wish to obtain further information.

Sarcoidosis Awareness Month Proclamations

Posted by Melany on February 12, 2013 at 6:05 PM Comments comments (0)

With universal sarcoidosis awareness month fast aproaching in April 2013 we are starting to receive proclamations from our provinces in Canada. Each province was approached by a letter back in December asking for their support by proclaiming April 2013 as Sarcoidosis Awareness Month and on April 13, 2013 people are asked to wear purple and white to show their support. We will post all proclamations that we receive.

It is with great pleasure to announce that,

Manitoba Proclaimed April 2013 as Sarcoidosis Awareness Month by the Honourable Theresa Oswald, Minister of Health.

Nova Scotia has proclaimed April 2013 as Sarcoidosis Awareness Month by the Honourable David Wilson, Minister Of Health.

Saskatchewan has proclaimed April 2013 as Sarcoidosis Awareness Month by the Honourable Dustin Duncan, Minister Of Health.

 

Influenza Vaccination In Patients With Pulmonary Sarcoidosis

Posted by Melany on December 2, 2012 at 11:45 AM Comments comments (0)

This article states that it is safe to get the influenza vaccine if you have pulmonary sarcoidosis. It has been suggested not to recieve the live vaccine which is given by nasal spray as most patients with sarcoidosis have already weakend immune systems. Please contact you doctor or health care provider for more information.

Influenza Vaccine and Sarcoidosis

Sarcoidosis Check List

Posted by Melany on February 25, 2012 at 5:00 PM Comments comments (51)

Sarcoidosis Check List

It has probably been a long road for most to get to this point of diagnosis with symptoms that may have already proven to be debilitating and possibly numerous tests and procedures that were all insignificant. Maybe a harsh cough that wouldn't go away or worsened over time, or other symptoms of pain and general ill health. Sometimes people stumble across diagnosis without major symptoms other than enlarged lymph nodes or a persistent cough. With an autoimmune disease such as sarcoidosis which is a multi systemic inflammatory disease, it is often very difficult for doctors to diagnose with just one simple test. The most common tests are x-rays of the chest which may show enlarged lymph nodes or scarring in the lungs. This is one of the simplest tests and most common beginning tests to start diagnosis of sarcoidosis. From this point it is a referral to a pulmologist to get a lung biopsy to determine if granulomas are present.

It is so often stated that sarcoidosis is a lung disease and there are many reasons for this. The main reason is it is easy to see on an x ray and also easy to confirm as lungs can be biopsied without any major complications or threats. Unfortunately this is the bad news for most because sarcoidosis often will affect more than one organ and so you will need to be seen by other specialists who can further determine where the sarcoidosis may be present as well as how to go about treatments needed.

There are people with sarcoidosis that were diagnosed through other routes and with other symptoms such as skin rash, eye troubles, and neurological symptoms. It is a disease that will mimic so many different illnesses and other diseases that for the family doctor to figure out what to do and how to check for diagnosis becomes just as frustrating to them as being ill is to the patient. The doctors have choices to make but the patient is stuck with how they feel until the doctors make the right choices and you are able to start treatments.

As someone new to sarcoidosis it is usually very confusing as the medical professionals seem to all be on different pages as to treatments and a plan of action to maintain their patients. This is where research, resources and awareness need to play a very important role. Medical professionals are taught extremely limited information about sarcoidosis as it is listed in a category of autoimmune diseases that is well over 250 diseases long and it is just to much for a family doctor to learn. We then rely on the specialists that we are sent to and most of them know as little as the family doctors.

A check list of tests that need to be preformed and followed through out a sarcoidosis patients life is as follows:

Blood Tests

  • ACE levels (Shows an increase when sarcoidosis granulomas are present)
  • CBC
  • Serum Calcium
  • Liver Function
  • Immunoglobulin
  • Vitamin D (1,25 - dihydroxyvitamin-D) Recomended Limit Under 42 pg/ml

Abnormalities in any of these test should prompt further investigation as to the cause and also be followed up more closely as these levels can change rapidly. Check the levels at your 6 month check up if no serious abnormalities warrant further investigation.

 

Urine Test

  • 24 hour collection (checking for increased levels of calcium)

This test should be done more frequently if symptoms of sarcoidosis are presenting. Otherwise every 6 month follow up should be fine to check the levels.

 

Respiratory Test

  • PFT (Pulmonary Function Test)

This test will show volumes of oxygen intake as well as the strength of your lungs functions. Every year this should be done if not sooner when functions are abnormal or condition worsens.

 

Eye Exam

  • Ophthalmology tests

The tests preformed by your ophthalmologist are much different than an optometrist as they dilate your eyes and can look further in your eye for symptoms. Get checked yearly.

 

Chest X ray

  • X-ray (Shows any progression of the disease in the lungs)

This should be done on a regular basis such as every year to use as comparison if things progress.

 

CAT Scan or MRI

Scan (Images help doctors to locate the granulomas in areas that are being affected to allow prompt treatment before progression). Should be recomended if systemic symptoms are presenting.

 

ECG or Electrocardiograph

These tests will show if there are abnormalities with heart function and will allow doctors to test further if suspected involvement of the heart. Every 6 months a ECG should be preformed and if there are changes this will be a good indication to follow up with your cardiologist.

 

Not all of these tests need to be done often but the ones that require a constant follow up are blood work, urine, X-rays, ophthalmology tests and PFT's. The ECG and CAT scan can be limited to every year or when symptoms prompt for a further investigation. There are also many other helpful tests to have preformed but most of those are only pertained as your symptoms require such as skin involvement will require biopsies.

There are many avenues to go down when diagnosed but make sure you do your research and find out what will work best for you. It also is recomended by doctors to get you flu vaccines as well as get your pneumonia vaccination which is usually given to people with surpressed immune systems. Check with your doctor on precautionary treatments.

When you have sarcoidosis there may be a never ending list of symptoms and it can be so confusing for your doctors, this is where having these tests done on a regular basis will help them with their decisions as to what the next step would be in diagnosing or treating the patient. It is a very good idea for all who have sarcoidosis to keep a copy of all their results from all of the tests done so they can take them to every appointment with them and have easy access to them when doctors forget to forward a result or they want to compare results from a previous test and have no copies. It makes you get the right help faster as well as cuts back on any unnecessary waiting.

You are the only person who knows what you are feeling and you also are the only real advocate you have for your own well being. Until there is more research available and resources to get information from we must stay aware of things and provide these details to the people who are trying to help us.

Stay strong and positive as well as educate yourself and other as to every aspect of sarcoidosis. It is not a shameful disease as there are no known causes or a cure. We must work together and support each other through all the frustrations and emotional ups and downs. Finding a place to learn and share your frustrations such as support groups with others who are sharing similar battles may be your best place to start. From there find your most recent and reliable sources of information about sarcoidosis and share them.

Melany Sealy/2012

Always great information and resources at www.nationalsarcoidosisorganization.com.

Canada Needs Awareness Petition

Posted by Melany on February 10, 2012 at 11:45 AM Comments comments (2)

As we all know Canada has a lack of support and awareness about Sarcoidosis and that we seem to have little support from our government.

The National Sarcoidosis Organization has received letters from both the Provincial and Federal levels of government, both stating that we as sarcoidosis sufferers should rely on the Lung Foundation for our support and resources.

It has been looked into and the Lung Foundation shows extremely limited resources for sarcoidosis and it comes to a better understand as to why Canadians have little awareness here about the disease. Our government does not recognize Sarcoidosis as the disease it is and I am asking everyone who wants to change this and have Sarcoidosis recognized in Canada to please sign the petition at the following link and pass this link on to all who support Sarcoidosis.

This petition will be brought to the local MP's, as well as the federal government for proclaiming awareness about Sarcoidosis.This will allow Canadian's to show more support, open doors for more research as well as allow more resources here in Canada for all who need it.

English 

http://www.petitiononlinecanada.com/petition/sarcoidosis-awareness-in-canada-needed/783

 French

http://www.petitionenlignecanada.com/petition/besoin-de-sensibilisation-sur-la-sarcoidose-au-canada/130

Childhood Sarcoidosis

Posted by Melany on February 4, 2012 at 1:50 PM Comments comments (52)

Childhood Sarcoidosis

Childhood sarcoidosis is not as uncommon as some may thing due to the fact it is commonly misdiagnose such as in adults. It is a multi systemic glaucomatous disorder of unknown causes much the same as adults get.

It presents itself in different ways as it affects different organs and depending on the age of the child it can mimic different disorders. There are two distinct forms of sarcoidosis that exist in children. Older children are more commonly diagnosed with the multi system disease similar to the adult manifestations, with lymphadenopathy and pulmonary symptoms. The younger children tend to have more skin, bone and eye involvement. For both forms of the disease oral corticosteroids tend to be the leading choice of treatment which is administered in smaller doses for shorter periods of time.

Childhood sarcoidosis can be self limiting to the child or chronic, and its characteristics vary among different populations with some evidence pointing towards African American children being of higher risk for the disease. The causes are unknown but point towards bacterial, fungus, virus as well as genetics may play some part but it has not been proven as to how anyone gets the disease.

Compared to the adult population where it has shown that 10 – 40 out of 100,000 people get the disease it is much lower in children 0.22 – 0.27 out of 100,000 children are diagnosed. In children it is diagnosed more frequently between the ages of 13 – 15 with joint pains and pulmonary involvement. Younger children before the age of 10 years is a rare diagnosis because they may be asymptomatic until they get older. Usually in very young children the common symptoms are fever, fatigue, malaise and weight loss along with other symptoms from certain organs such as lungs, eyes, skin, and lymph nodes.

Lymphatic Symptoms – This presents itself with enlarged lymph nodes which are usually firm, not tender and move freely. 40 – 70% of childhood cases show this involvement.

Eyes – The child will show signs of pain, blurry vision, sensitivity, and redness in their eyes. Approximately 29% of children show eye involvement and if left untreated may cause serious damage or even blindness.

Skin – The rash most commonly seen in children with the disease are red to yellowish brown colored rash, or flat topped red papules usually on the face. You may notice large purplish scar looking formations on the trunk of the child or even nodules that are pigmented and ulcers. Children are commonly known to have rashes from many things such as diaper rash, allergies and even other illnesses so it is hard to diagnose skin involvement with out biopsy.

Bones and Joints – Symptoms are joint pain, stiffness, and lack of movement. It can affect any joint and cause a form of arthritis similar to adults. Sarcoid arthritis can be commonly confused with juvenile rheumatoid arthritis making diagnosis hard. It is thought that bone involvement is rare in children with approximately 15% to 58% of patients that have involvement in their musculoskeletal system.

Other Organs – There are many organs much like the adult form of sarcoidosis which can be affected. It shows that childhood sarcoidosis can involve the Parotid Gland, Heart, Nervous System, Kidneys, Pancreas and Liver. There are no limitations when it comes to where this disease can and can not affect.

With it being an inflammatory disease and with it affecting children which may not be able to articulate the way they are feeling, makes both care givers, doctors and patents struggle to diagnose and treat this disease.

The prognosis of childhood onset of sarcoidosis is unclear because of the rarity of the disease but however the overall prognosis is good compared to adult onset of the disease. It has been stated that when the child reaches adulthood and has gone through treatments as a younger child they may still be symptomatic but show no worsening of symptoms. This fact was stated as to the child receiving constant and proper treatment as they grow. With this also being said it has been proven that it will depend on the severity and where the disease has involved in the child.

Childhood sarcoidosis is just as severe and debilitating as adult sarcoidosis. It mimics different disease the same way in children and it causes as much discomfort and frustration to the child as it does with adults. For a parent or care giver it can be exhausting, frustrating and worrisome. Along with the lack of knowledge and resources available it proves more research must be done to find not only answers to the questions we all have but a cure.

Support both for the child and the care giver is essential to a better understanding of the disease and help comfort one another. Open communication between the child, parents or care givers and their doctors plays a big part of treatment along with the proper medications or care needed.

Sarcoidosis Brochures

Posted by Melany on January 31, 2012 at 11:20 AM Comments comments (49)

As we know there is not much available for Canadian's such as brochures which can be a convenient way to spread knowledge and word about this disease. We are in the process of publishing three brochures and hope to have them ready next month.

  • Sarcoidosis The Disease With Many Faces - Will explain symptoms, diagnosis, treatments and more facts.

Thank you Cheryl Gould and Dawn Smith for the design of our new brochure which you will be able to download and print on your own soon.  As well you will be able to purchase them online under our Gifts and Stuff page for better quality or large quantity.

 

  • Sarcoidosis Support - Will offer advice to friends and families as to what patients deal with and better understanding how to support patients.
  • National Sarcoidosis Organization - Will tell people about the organization and how we intend to help Canadian's.

There will be more published in the future about other area's of the disease and important facts that need to be shared with everyone.  These brochures will be available to order here once we have them, it will be set up and posted here for easy access. There will also be a brochure that will be available in doctors offices once they get approval.

We hope that by providing you with more resources you can help yourself with better understanding of the disease or help others. We appreciate your patients as we get things going and we want to keep you up to date as what we are doing for you.

 


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