Tweeting About Scleroderma Is Not Just About Scleroderma

By Karen Vasquez, www.themightyturtle.com

June 3rd, we’re going to get #Scleroderma to trend world wide.  I did not say, “might”, or “we are going to try”.  We will do this.  Scleroderma will trend.  Because as Yoda said, “Do or donot.  There is no try.”

Oh my God, WE’RE ALL GOING TO DIE!!!!

When I was diagnosed with scleroderma in 1994, I was told by doctors I could drink and shop all I wanted, because I was most likely gong to die. For a few years, that’s exactly what I did.
 I figured out that what the doctors said was partially true:  I was going to die.  What I forgot was, someday, we’re all going to die.  I know.  You’re shocked.  Someday, we are all going to die.  We are not going to live forever.  I know you just placed the back of your hand on your forehead, gasped and retreated to the fainting couch.  That’s okay.  I can wait…
Welcome back.  So, scleroderma and Sarcoidosis, along with God knows what else has been progressively killing me, for 20 years, so far.  Surprise!   I’m still here.   And it might not kill me.  I could have a total meltdown and cry that my life is over because my body is slowly hardening like the fiberglass epoxy and lead based paint I worked with while I was in the Navy.  I could have a melt down, wander in the street blinded by my own tears and get hit by a bus.  Living every day like it is your last is stupid.  I hate that song by the way.   I learned from my grandfather, never say goodbye.  It’s always so-long, because we will always meet again.  Here on this plane of existence or another.  Bite me Tim McGraw.   (Seriously, if you ever divorce Faith, give me a call and bite me.  I would totally be your rebound FWB.  Sorry Tim,  I can’t be in a committed relationship with someone who lives like they are dying.)

So I reached out and touched some people, and not on OkCupid.  Well, mostly…
In 2009, I finally started writing and reaching out to others.  Since that time I have become exponentially healthier mentally.  For years, I felt like my diagnoses had taken away my life.  scleroderma and sarcoidosis took away many things, but it did not take away my life.  Yes, I missed many things because of too many things medical to list here.  I have had pain and damage to my body that at times sends me to a quiet place to cry.  So, I learned to feel those feelings, express them, get up and get on with it.  We all have challenges in life and experience pain in many ways.  No condition is less valid than another.  And the past 20 years of my 42 (Yes, I do give my age.  I am proud of every year & every wrinkle.)  I have the greatest gift of all, my son.  It was a huge risk, I almost died, but what I had, could have happened without scleroderma.   A rheumatologist I had at the time was also pregnant.  She told me to watch my blood pressure because of my age.  I had a one in a million chance of complications.  So, of course, I had HELLP syndrome. I should really consider playing the Lottery.  Living a full life does not happen without risks.  We don’t have to have kids to live a full life.  We need to live our life in the now take step out of our comfort zone with some risks.

We have a lot in common, but we are not the same.Through the magic of the interwebs, I met fellow patients with different diagnoses, but shared experiences. No. I don’t think we should all fall under the same umbrella.  We need to maintain our identity to raise awareness about specific diagnoses and new symptoms.

Why June 3rd is not just about scleroderma.
Scleroderma is a classified by a group of specific symptoms occurring at the same time.  

    PulmonaryHypertension
    Esophageal Reflux 
    Interstial Lung Disease 
    Dyspnea
    Vasculitis

You know what?  You and I don’t have time for all of this.  Go to SclerodermaResearch.org, SclerodermaCare.org FESCA.org or SclerodermaCareFoundation.org.  Just google it.

Get to the point already.
Not everyone is on Twitter, but what happens on Twitter, makes the news.  And because all 7 billion of earth’s population is not on Twitter, that makes our goal of getting #scleroderma to trend, a possibility.  On June 3rd, getting #scleroderma to trend will be a reality and we need your help.

June 3rd is Monday.  Don’t people have to work?
Yes, a majority of people will be working.  The odds of one being in front of a computer are high.  Why not use this  noble cause to mask that Monday visit to I canHaz  Cheeseburger?

You can’t Tweet from you computer at work , you say?  You don’t have to break the rules, use your phone!
I know that all of you reading this post right now, would never dream of using work time to play around on Twitter, but I do know you could squeeze it into a break.  So ,when you step away from the hustle and bustle, and tweet from your phone. Download the app to your phone.   Follow the prompts.  Ask a friend.  Call tech support.  It’s FREE to tweet!  Use that alarm app you never use to remind yourself to tweet.

You can set up automated tweets, free!
If you would really like to get into the spirit, download Tweetdeck app to your computer.  Yes, it does work on a Mac.  I use it on mine, and unlike Hootsuite, it’s free.

Short on time or don’t know what to say?  No worries!  Retweet!
You can go to @TurtleMighty, @Short_of_Breath, @pixiecd13, @srfcure, @bouncetoacure, @TreatmentDiaries @sclerodermatt, or any Twitter person in this list: Let’s Set The Trend https://twitter.com/TurtleMighty/set-the-trend/members and Retweet anything with only the tag #scleroderma in it.  Stay away from anything that says miracle cures.  There will be snake oil.  But if snake oil sneaks in, it will only improve our numbers, so don’t sweat it if you accidentally RT some snake oil.  They try to look legit, but they are not fooling anyone.  (Yes, I am talking to you @Trips to Jordan!)

Why ONLY #scleroderma?
The goal of a tweet is to get the most info in the least amount of characters.  We can do that.  Our goal June 3rd is to get #scleroderma to trend. There is no second place, no runners up and no one organization or foundation directly benefits financially from this.  Make no mistake, non-profits have everything to gain by participating. We will ALL be a part of #scleroderma breaking through the confines of Twitter into the mainstream media.   Foundations who do tweet about #scleroderma get the bragging rights to say they participated.  They can get their name out there before World Scleroderma Day, June 29, so people know what scleroderma is, who they are ad what they do.  Non-profits can tell patients, caregivers and the world that they know that we are all in this together, understand that we all stand on the shoulders of giants.  Research of just one disease helps patients with different diagnoses.  One great example:  Beneylysta, the first FDA approved treatment for Lupus, EVER, is now being researched to treat Vasculitis:  a condition where the body's immune system attacks blood vessels. Sound familiar?  Yeah, it’s a condition of patients with scleroderma.  Like I said:  Different names, same team.  You are already on the team.  Play in the giant sandbox that is Twitter with us, June 3rd and set the trend.-
KarenVasquez

May is Lupus Awareness Month!

May is Lupus Awareness Month, and today is World Lupus Day!

So what is lupus?

It is an autoimmune disease which can affect any organ system in the body. There are 4 types of lupus. SLE, or Systemic Lupus Erythematosis is the most serious form of lupus and it commonly attacks the heart, lungs, and kidneys. CLE, Cutaneous Lupus Erythematosis, is limited to the skin, causing rashes and lesions (sores). Unfortunately CLE can lead to SLE over time, and children (making up 5% of patients diagnosed) who develop lupus early in life are more likely to have serious complications. NLE, or Neonatal Lupus Erythematosis, affects the infant of a mother with lupus.  The mother’s antibodies can cause lupus symptoms in newborns which disappear after a few months. There is also DLE. Drug-induced lupus Erythematosis is a reaction to a few specific drugs by a small minority of people. Generally the symptoms of that lupus disappear after stopping the medication causing the issues.

How is Lupus related to Pulmonary Hypertension?

Well, lupus is significant cause of Secondary Pulmonary Hypertension.  Studies have shown that up to 60% of Lupus patients develop some kind of pulmonary involvement, including PAH. Related to scleroderma, lupus can also cause damage to the blood vessels of the lungs, leading to increased pressure.

Who can get lupus?

Anyone is capable of having lupus. It is not a contagious disease, so you cannot “get it” from someone. While 90% of the patients diagnosed with lupus are women, men are capable of developing the disease as well. It is most common for women to develop the disease from the ages of 15 to 45; however children may also develop lupus.  For men, diagnosis later in life is more common. African Americans, Hispanics, Asians, and Native Americans are most likely to develop the disease.

So what are the symptoms?

Since SLE can affect any organ system there are many different symptoms of lupus. The most identifying of these is the “butterfly” rash that gave lupus its name, because it looks like the “mask” of a wolf and lupus is the Latin name for wolf! Other common symptoms include extreme fatigue (we all know the effects of that!), headaches, painful and sometimes swollen joints (90% of patients experience joint or muscle pain), oral lesions or ulcers (the most common symptom with 95% of patients developing these), fever, hair loss, and sun sensitivity. As the disease progresses, more organs are likely to be involved. While up to 40% of all patients will develop renal complications, over 50% of children diagnosed with develop renal disease, and this is thought to be caused by the long duration of the disease.

How is lupus diagnosed?

Because there are so many different combinations of symptoms, and those symptoms are common in many diseases, it is often very difficult to diagnose a patient as having lupus. Like patients with PH it can take 5 or more years to diagnose each case! There are several laboratory tests that are given and analyzed along with the patient’s entire medical history in order to rule out other possibilities. As with PH, doctors are taught to look for the horse first, seeing the zebra after much testing!

Will the children of lupus patient develop lupus as well?

You might think that since lupus is genetic in nature that it would be hereditary. That is not the case. Only about 5% of children with one or more parent living with lupus will develop lupus as well. Unfortunately for those children there are no genetic tests available for early diagnosis.

  How is lupus treated?

Like PH patients, those diagnosed with lupus must see a specialist, a Rheumatologist. The involvement of other organs may require the addition of other specialists, and the coordination of all doctors on the overall care of the patient. Many patients will take many medications often for the rest of their lives. There is no cure, and no treatment is guaranteed to work. It has been found in many cases that, while PH cannot be cured or treated with other medications, controlling the lupus will also keep the PH manageable. Drugs include steroid, anti-malarial, and immune-suppression drugs. Care and management of this disease can be very expensive, especially when a patient is no longer able to work or provide for themselves.

What kind of life can those living with lupus expect?

80-90% of patients diagnosed with SLE can expect to live a relatively normal life. There are many organizations out there to help all patients cope with the challenges presented in their life, including utensils to assist opening jars! To assist the patient with medical costs, many drug companies offer financial assistance. Many communities also offer help with housing and mobility.

Where can I get more information on lupus, or offer help to patients?

The Lupus Foundation (www.lupus.org) is the lupus equivalent to PHA. My favorite patient support group online is But You Don’t Look Sick, the origin of “The Spoon Theory”. (www.butyoudontlooksick.com)

Resources:

http://health.nytimes.com/health/guides/disease/systemic-lupus-erythematosus/complications.html

http://www.lupus.org/newsite/pages/lupus-facts.html

http://www.lupus.org/newsite/index.html

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html

http://www.phaonlineuniv.org/Journal/Article.cfm?ItemNumber=718

Jenny's Story: PH and Lupus, Fibromyalgia and Sjogren's syndrome

In August 2010, Jenny Klick of Winter Springs, Florida found herself out of breath – she couldn’t even walk to the bathroom. She attributed her symptoms to smoking and her limited airway disease. However, she wasn’t quite sure and went to the doctor anyways. Her doctor ruled out upper GI problems and sent her to a pulmonologist who concluded she just wasn’t taking her Advair correctly. Still out of breath, Jenny goes to a cardiologist. He performed an echocardiogram where he determined Jenny may have pulmonary hypertension. Like too many patients, she was already in respiratory failure and immediately went to the emergency room. 

In order to confirm pulmonary hypertension, the cardiologist performed a right heart catheterization. However, Jenny’s doctor could not complete the procedure because her pressure was too high. Nonetheless, Jenny finally had a diagnosis – Class IV PAH due to the lupus that never really caused her too many problems. 

Though the diagnosing cardiologist noted she would eventually pass away from the disease, he didn’t faze her. Having several other chronic illness including lupus, fibromyalgia and Sjogren’s syndrome, Jenny understood she could not be cured but knew she could continue life with the positive outlook she’s always had. Once Jenny was placed on Revatio and Tracleer, she was released from the hospital and began to feel a lot better and continued life as usual.  

A few weeks later, Jenny made an appointment with Dr. Tarver, a well-known PH specialist in Orlando. Like many patients, Tracleer was beginning to affect her liver and began taking Tyvaso instead. Jenny began feeling better and stopped thinking about her new diagnosis. As Jenny describes, living with PH became her “new normal.”

It wasn’t until Jenny came across an issue of Pathlight did she realize how devastating the disease could be. Soon after, she attended her first support group where she met other patients and caregivers. Months later, she became a support group co-leader and is now in charge of scheduling guest speakers for the group. Jenny loves her role citing “everyone in the PH world is eager to lend a hand and tell their story.” Jenny’s involvement in the PH community extends to her participation in PHA’s 10^th International PH Conference and Scientific Session last summer. There, she met more supportive individuals who directed her to PH Family, a community-operated Facebook page. She remains active with the community on Facebook, PH Central, and goes to the PHA website frequently. Jenny is also a Tyvaso Peer Mentor for United Therapeutics’ Peer Network.

Though Jenny has been fortunate throughout her journey with PH, in January she was hospitalized for a week with a serious respiratory infection. Since then, she reports feeling like “a typical PH patient” as simple task like going up stairs is now very difficult for her. Her doctor concluded her limited airway disease decreased the effectiveness of Tyvaso so her dosage was increased from 12 puffs to 15 puffs though the average dose is 9 puffs. However, her heart rate is still out of control and hopes to find a solution soon. 

It is important to mention Jenny has a strong faith in God and has kept a positive outlook throughout the last couple of years. Though she lives with other serious chronic illnesses, she admits PH has been another beast and is thankful for the support she has received from her family and friends. Her husband especially has been a great caregiver to Jenny and has worked to learn as much as he can about PH. He even called family and friends to talk to them about her new diagnosis so she wouldn’t have to. Jenny knows she is “very blessed to have support and understanding” from those who care about her. She is also thankful for PHA and wishes for a day when she can receive the same great support for her other illnesses. 

By Imani Marks, Patient & Caregiver Services Intern

Based on an interview with Jenny Klick