as a 39 year old single parent that has sarcoidosis I think that it is really important to publicize this disease. I have it in my heart, my lungs, my head, my skin and my eyes. I nearly died when I was 35 years old because this disease caused my heart to beat so fast ( V-tach). Most people h...

as a 39 year old single parent that has sarcoidosis I think that it is really important to publicize this disease. I have it in my heart, my lungs, my head, my skin and my eyes. I nearly died when I was 35 years old because this disease caused my heart to beat so fast ( V-tach). Most people have never heard of sarcoidosis and have no idea how it can affect lives. I have an AICD now and without it I would be dead and this is all because of Sarcoidosis. There is no cure or real treatment that can fix this. It is a disease that causes so much suffering because most of the people with it are medicated to mask the symptoms and they are not "treated" It is not a cancer, and sometimes I think that I would be better off with cancer because there are real treatments for it.

Raising Awareness about a little known illness which is wreaking havoc on the lives of many people. I got diagnosed with Pulmonary Sarcoidosis in March of 1998 and by August of 1999 I had to stop working and go on total disability. I have granulomas throughout my body. I am in chronic pain 24/...

Raising Awareness about a little known illness which is wreaking havoc on the lives of many people. I got diagnosed with Pulmonary Sarcoidosis in March of 1998 and by August of 1999 I had to stop working and go on total disability. I have granulomas throughout my body. I am in chronic pain 24/7. I have ended up in the hospital more times to mention , because the Sarcoid likes to attack the area around my heart. It has in the past attacked my liver and eyes. At one point I was even on oxygen. This is a very cruel disease and there are so many people that are suffering. So it would be nice to see a show based on this illness and the affects it has on the body. Yes there are those who have it and have no affects whatsoever from this illness and yes you can live a long time with it but, there are those like my self, who are suffering day by day and I do know of some who have died from complications brought on by this cruel disease.

Kidney Cancer is a rare cancer which does not respond to traditional chemotherapies or radiation. It is NOT something doctors typical check for. If found due to symptoms, it's usually in the late stages. If found early, it's usually found due to an scan/ultrasound/MRI being performed for an...

Kidney Cancer is a rare cancer which does not respond to traditional chemotherapies or radiation. It is NOT something doctors typical check for. If found due to symptoms, it's usually in the late stages. If found early, it's usually found due to an scan/ultrasound/MRI being performed for another reason such as a car accident.

When my husband was seen and told (on our one year wedding anniversary) that he had kidney cancer, he was also told it was non-surgical, non-treatable, and non-curable. We went for a second opinion at a larger facility. He had a radical nephrectomy with liver resection and vena cava resection. The surgery was over 10 hours long. They almost lost him twice during surgery. He lost his total blood volume which was replace with over 20 units of blood. He survived surgery - a miracle - without any cognitive deficits - another miracle. He then underwent the only known treatment to cure kidney cancer called High Dose Interlukin-2. It almost killed him and did not work. Long story shorter - my husband currently has a brain tumor, multiple lung tumors, liver tumors, kidney bed tumors among others. He's still fighting the good fight. Three years ago we were told "go home and get your affairs in order." But there is hope. Patients need to know - if one doctor can't help them - get a second opinion. A third opinion if necessary.

Also, with kidney cancer being a rare cancer, a cancer commonly known as an older man's cancer, there have been few treatments available in years past. However, because the incidence of kidney cancer is on the rise and it's effecting younger and younger folks, including women - more research is being done and more treatments are available.

What we need is Kidney Cancer Awareness! We need folks to be aware of the symptoms which are very common sxs for other diagnosis. We need folks to know what causes kidney cancer. We need folks to know that there are different types of kidney cancer due to different cell types. We need folks to be aware that there ARE treatments available and there are new procedures available such as:
cyberknife - which my husband has had to his brain tumor met
cryo-ablation - which my husband had to his kidney bed tumors
radio-friction ablation - which my husband had to his liver lesions

There is always hope and the most important thing is find a doctor who specializes in renal cell carcinoma. At least a doctor that knows about kidney cancer doctor. AND never, ever, ever .... believe a doctor when they say "I got it all. You no longer need follow-up."

I can't tell you how many horror stories I've personally heard from fellow rcc pts who never got followed up because their urologist said "I got it all. No follow-up needed."

Don't get me wrong. I'm a nurse. Doctors are a blessing and their knowledge continues to amaze me. But people need to know that just because one doctor tells them something THAT does not make it the gospel!!! Just because one doctor tells you there is no hope - don't believe them. You have to be your best patient advocate. Be aware of the available newer medications, procedures, etc.

A whole show needs to be dedicated to this particular illness. I can give you a list of guest, inlcuding my husband, who would be happy to go on your show and share their stories. There truly is so much people need to be made aware of and ultimately my goal is this .....

To bring more awareness to this little known cancer called Kidney Cancer. The more awareness, the more research. The more research, the more treatments. The more treatments, the closer to a cure! The closer to a cure, the closer to the possibility of growing old with my precious husband!!!!

Please, please, please help bring awareness to Kidney Cancer!

Thank you so much for your show!

Love and peace !

Leigh and Allen

A show in the topic of Congenital Heart Disease would be excellent. Here's the issue in a nutshell.

Congenital heart disease is the #1 birth defect in the United States. When you say that though, what do people in this country automatically think of? Heart disease is heart attacks...

A show in the topic of Congenital Heart Disease would be excellent. Here's the issue in a nutshell.

Congenital heart disease is the #1 birth defect in the United States. When you say that though, what do people in this country automatically think of? Heart disease is heart attacks and strokes, right? Well, that’s not right. We need to make the case to the world that there are TWO kinds of heart disease (acquired and congenital) and that both need unique lifelong care.

Many don’t understand that congenital heart disease defined is a heart malformation present at birth. Think of the heart as like a house where there are rooms (chambers of the heart), doors (the valves) and hallways (the arteries and veins). Congenital heart defects are really just a problem with the layout of the heart---the doors, halls and rooms can be misplaced, malformed or even absent, there can be extra rooms or halls or even holes in walls or walls missing.

So this is much different that what most people think of as heart disease (heart attacks and strokes). I would tell the public to think of “regular” or acquired heart disease as a problem with the gas supply coming into the house (for example the line that brings oxygen to the heart muscle is clogged with plaque and blood clot).

Both kinds of heart disease deserve prevention messages because children with congenital heart disease need lifelong specialized care and so many do not realize that they can stay healthy as they move into adulthood even though they have had reconstructive surgery for the layout of their hearts.

There is no question in my mind that cholesterol, smoking, high blood pressure education is important for heart disease prevention and my congenital heart disease patients need that message too, but they need another about lifelong care specialized care for ADULT CONGENITAL HEART DISEASE (ACHD) that we are not yet delivering in a full blown way.

We know there are 800,000 children and 1 million adults in the United States today. Children and families need the message of hope and they need to know that there are folks who can and should see them in adult life as certain more complex defects really need to be seen by an ACHD Center on a regular basis. Some patients may be seen by the local cardiologist and seen at least once by an ACHD Center in their adult life.

Check out:
www.achaheart.org
www.pennstatehershey.org/pachd

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. -Margaret Mead US anthropologist & popularizer of anthropology (1901 - 1978)

MJNickolaus, CRNP

In 2004 I was paralyzed after getting Transverse Myelitis. It is part of the same family of disorders that MS belong to. TM is rare, 1-3 people per million per year get it. Other disorders in this "family" include ADEM, NMO, MS... Please go to www.myelitis.org to find out more.

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In 2004 I was paralyzed after getting Transverse Myelitis. It is part of the same family of disorders that MS belong to. TM is rare, 1-3 people per million per year get it. Other disorders in this "family" include ADEM, NMO, MS... Please go to www.myelitis.org to find out more.

People know about MS but they do not know about TM or ADEM and it would be great to get more awareness about it.

I have found that not many people are aware of what these diseases are about.
They have never even heard of them.
It is very discouraging that I live every day fatigued and in pain.
To look at me you would not know I am sick and that I live every day with this challenge....

I have found that not many people are aware of what these diseases are about.
They have never even heard of them.
It is very discouraging that I live every day fatigued and in pain.
To look at me you would not know I am sick and that I live every day with this challenge. Some days are worse than others, some days I do not even get out of bed, making it impossible to hold a job.
Would you please help educate the public about these diseases? thank you.