Saturday, February 28, 2015

5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson

5 Things Every Person Living with a Rare Disease Understands

Blogger Rachel Wilson
Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.
Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.
How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.
In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:
  1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
  2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
  3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
  4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
  5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”
And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”
Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.
For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

Saturday, February 14, 2015


Dear Darling, Happy Valentine's Day.  It has been three years and two months since I have kissed you.  I miss you, Babe.  I dream of you often.  As the years have passed~ Spring, Summer, Autumn and Winter continue to flow as scheduled.  The children are growing, fine young people.  Our home, still safe and comforting.  The river so surreal, a beautiful gift everyday.  Sunrise and sunsets, with birds flying and making sounds.  The fish jumping upon waves of diamonds.  Clouds, kissed by light, whisper and beckon .  
The Stars, though, as beautiful as they are, To me, do not shine as brightly.  However, the Moon, is as mystical and glowing~ as ever before.  Blooming and ever-changing, like a Rose.  
I could go on and on.  Words really can't explain the transformations that occur moment by moment in the daily life.  For You, words do not have to.  You penetrate my heart, existing in all that my senses allow. ~~~Breathing~~~

“There is a time for departure, even when there is no certain place to go.” 
Tennessee William

****Hello, this is Breathing, I just wanted to Thank You for all the support you have given to Pulmonary Fibrosis, as well as me.  My 'counter' indicates 13,208 people have come to my blog, from many different countries.  I hope our family's experience has helped to raise awareness.  I do know this blog has helped me through such a difficult time.  I have shared with you our experience and have never held back, because most of this I typed in 'real-time'.  Now, I have transformed a bit since my husband's passing.  Not too much, but just enough to somehow realize that I have many thoughts that are better realized in my own time.  I will not post as much here, but anything that seems newsworthy to our cause will not be ignored.  Thank You my beautiful friends.  You show support just by coming here and reading this:

The word "pulmonary" means “lung” and the word "fibrosis" means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But, pulmonary fibrosis is more serious than just having a scar in your lung. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.
Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don't include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it pulmonary fibrosis.

The most common symptoms of PF are cough and shortness of breath. Symptoms may be mild or even absent early in the disease process. As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses patients may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone, or even eating.
Due to a lack of oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have “clubbing” of the fingertips. Clubbing is a thickening of the flesh under the fingernails, causing the nails to curve downward. It is not specific to IPF and occurs in other diseases of the lungs, heart, and liver, and can also be present at birth.
Other common symptoms of pulmonary fibrosis include:
  • Chronic dry, hacking cough
  • Fatigue and weakness
  • Discomfort in the chest
  • Loss of appetite
  • Unexplained weight loss
The Pulmonary Fibrosis Foundation is here to help you understand what it means to have pulmonary fibrosis. You can always reach us through our Patient Communication Center at 844.Talk.PFF or by email at

~~~~For my Baby, On Valentine's Day~~~~


You'll remember me when the west wind moves
Upon the fields of barley
You'll forget the sun in his jealous sky
As we walk in fields of gold

So she took her love
For to gaze awhile
Upon the fields of barley
In his arms she fell as her hair came down
Among the fields of gold

Will you stay with me, will you be my love
Among the fields of barley
We'll forget the sun in his jealous sky
As we lie in fields of gold

See the west wind move like a lover so
Upon the fields of barley
Feel her body rise when you kiss her mouth
Among the fields of gold
I never made promises lightly
And there have been some that I've broken
But I swear in the days still left
We'll walk in fields of gold
We'll walk in fields of gold

Many years have passed since those summer days
Among the fields of barley
See the children run as the sun goes down
Among the fields of gold
You'll remember me when the west wind moves
Upon the fields of barley
You can tell the sun in his jealous sky
When we walked in fields of gold
When we walked in fields of gold
When we walked in fields of gold