Raising Awareness By Walking With Straws

November is PH Awareness month! All around the country and the world, there have been events of all sorts to try to promote awareness of pulmonary hypertension, and to raise funds to go towards research and hopefully a cure one day. Here in Western NY, there was a first-ever fundraiser done by Emily, the daughter of a PH support group member that I run (his name is Scott), and the student athletic committee at the college she attends. It was a 6 minute walk marathon, which is just one of the many tests a PH patient usually does when seeing their PH specialist. It's a baseline test used to see how far a patient can walk in just 6 minutes. It can be done with or without oxygen, and a patient can stop if they need to during the walk, but the timer will still tick if they do.

The 6 minute walk marathon fundraiser required participants to use straws. Why straws? Well, trying to walk breathing only through a straw simulates exactly how a PH patient feels on a daily basis. The shortness of breath felt trying to breath through a straw while walking hopefully gives a person a sense of how a PH patient feels trying to get dressed, or walk up a flight of stairs, or down a short hallway. The walkers had a choice in straws: a short straw, a long one, or a skinny straw. Each had a different degree of difficulty, with the shortest straw being the easiest, and the skinny straw being the hardest.

All the participants registered to do the walk, totalling a little over 100 people. The huge majority of people were athletic students, including almost the entire baseball team! After a wonderful welcome and introduction as to the purpose of the PH walk, everyone went outside and began the marathon. The path of the 6 minute walk was around the student center, near the library, and back to the student center. There were PH facts along the entire path. There was a timer counting down the minutes, and paramedics on stand-by just in case breathing through a straw caused a medical issue for someone! Everyone did well, though, including myself and one other PH patient who had attended!

After the walk, everyone gathered for pizza and drinks, and a little more money was raised by selling tickets for several raffle and door prizes. Eventually I joined Emily on the stage, and thanked the crowd for coming and experiencing what it felt like to have PH, if only for a few minutes. The raffles were given away, and soon the crowd had thinned out. While the event was short and sweet, I hope that it served it's purpose, which was to raise awareness of this disease. I do know that at least the athletes at the school are aware of it now! Hopefully another walk in the future can be planned, and perhaps be a bit bigger and involve more of the community!

Side note: Emily and I, as well as a couple other athletes, were filmed for one of the local news stations a couple days before the walk. We each were asked questions about the walk, why we were doing it, etc. I did share some of what I go through living with PH. Three different segments were aired in the early morning hours the day before the fundraiser. I did learn the next day that a few people had written in about the segments, either concerned because they thought they might have PH, or they have had PH for a long time and didn't know there was a support group in the area. I have reached out to these people since, and I'm just glad that a brief amount of TV airtime at least helped a few people!! 

PH Plus Awareness: Samantha-Anne's Story

This is a long post. If just one person reads this, though, and it helps them to not have to wait 3 years to be diagnosed with Pulmonary Hypertension, then it has been worth it.

The first time I heard about Pulmonary Hypertension was on August 18th during my first appointment with the pulmonologist. It was included in a list of other things I hadn't heard of that might be causing my illness (interstitial lung disease, cardiac asthma, sarcoidosis and PH; I had heard of pulmonary embolism because that is what killed my brother in 1990 at the age of 47.) I knew that all of these things were serious, so I starting learning about them. I'm not sure why it took so long for my doctor to send me to a "lung doctor" when my main complaint for the past 2 years had been shortness of breath (SOB), but I was glad to finally be there.

PH seemed to fit with what was going on with me. However, a lot of other diagnoses had fit before and I honestly didn't want to be disappointed yet again when the doctor told me that I didn't have x,y or z and that he didn't know why my life had changed so drastically since November of 2011. After doing pulmonary function tests, an exam and having me walk in the office while my oxygen saturation level was monitored, the doctor said I would need to have a CT scan to rule out blood clots in my lungs. That honestly was not scary to me because I've been checked for that so many times due to my family history. He said that if there were no blood clots, then I would have to have a right and left heart catheterization procedure to see if I had PH. I had a left heart cath a year ago so I wasn't nervous about that, and since I had no idea what PH was, I didn't worry about it either.

My pulmonary function tests the year before showed that I have a mild restrictive process in my lungs but no obstructive process, so no COPD (which my mom died of in 2000, so I was glad that was ruled out.) I do have mild Alpha-1 Antitrypsin Deficiency, which can affect the lungs, so I knew that lung problems could happen to me. The PFTs he did on 8/18 showed that my lungs were not moving the oxygen in the air I breathe back into my blood (that's poor diffusion capacity). Mine was about 1/3 of normal. An MRI had already shown that my pulmonary artery is slightly enlarged, so I knew that something was going on and all signs were pointing to PH.

Because I really push to get things scheduled quickly and stay on top of my care, I was able to get the CT scans scheduled for 8/21, just 3 days after seeing the pulmonologist. The CT scans showed some mild lung scarring that I already knew about and thankfully no blood clots.

During these weeks I was dealing with a lot of body wide pain (unrelated to the PH) and swelling in my feet, ankles and legs. They basically were just huge stumps, from my toes to my stomach, with no delineation between the three. They hurt and the stinging in my feet was unbearable at times. I was also having to keep an eye on my kidney status because I have Stage 3 Chronic Kidney Disease. Thankfully, there are 5 stages and my disease is mild.

Let me take a second here to talk about the word "mild". I hate that word now. Everything I had going on with me was "mild". Mild means that the doctors don't do much for you and they basically wait until it's not "mild" anymore before they get serious about talking to you or treating you. At least, that was my experience. So even though "mild" is good, it sucks. My cardiologist told me that my heart issues were "mild" and didn't need to be treated and that I should see if the pulmonologist could help me figure things out. That just didn't seem right to me. I started asking myself a lot of questions and realized that I had a lot of questions for the doctors. My life had changed drastically in the past 2 1/2 years and something was causing that. There is no way I could go from being able to hike 2-4 hours at 7000-8000 feet altitude to being SOB and having a racing heart just walking room to room in my house.

I started believing that PH was the illness that was causing my problems so I made an appointment with the PH Specialist in Denver. Neither my cardiologist nor my pulmonologist told me to do that. I did it because I was tired of not knowing why my life had been turned upside down and I wasn't going to wait on them to tell me what to do to get better (since they hadn't done that anyway.)

At the beginning of September, I went back and looked at the sleep study I had done the previous November. I knew I had sleep apnea and was supposed to wear a CPAP, but it made me feel claustrophobic and like I was suffocating so I didn't wear it. I was diagnosed with obstructive sleep apnea in 2006. I got my first CPAP that same year. I had never used my CPAP consistently in all that time. When asked by my doctors if I used it, I told them how it made me feel and that I was not using it very often. No one followed up, no one did any education, no one did any counseling and no one referred me to a sleep disorders specialist. When I looked at the November sleep study (that I had requested be done,) I noticed that my oxygen level was <90% for >99% of the night with and without the CPAP. That didn't seem right to me. I thought that oxygen levels were supposed to be above 90% all the time. The pulmonologist had mentioned getting me compliant with the CPAP so I thought I should look into that. I called the center where I had the study and no one, to this day, has ever called me back. I just kind of figured that it must not be that big of a deal if no one called me back. I was very wrong about that. 

One of the most fortunate things that happened to me was getting sick around September 7th. I ended up in urgent care for bronchitis and an upper respiratory infection. They gave me oxygen and a breathing treatment and sent me home with a ton of meds. I called the pulmonologists office to let them know about my sudden illness. I spoke with Linda, the doctor's nurse, for 41 minutes on the phone. She was the first person who seemed concerned about the results of the sleep study and that I was so sick for so long without a diagnosis. She asked me to come into the office that afternoon so she could see me. She did a very thorough exam and asked a lot of questions. I left the office that day with supplemental oxygen. I could tell right away that adequate oxygen intake is a good thing. It felt so good to breathe. She took copies of my sleep study and my other paperwork to discuss with the doctor before my appointment the following week. Linda really cared, and her taking the time to evaluate me has made all of the difference in the diagnosis of my illness. Just days later, I was set up with 24/7 oxygen at home, including using it with my CPAP at night so I could get adequate oxygenation. On 9/12, when I had my PFTs done again, my diffusion capacity was 2/3 of normal. That was an improvement. My lung function wasn't as good, but I had bronchitis and the URI so that kind of made sense.

So, at 54 years of age, I was on supplemental oxygen 24/7 and taking diuretics to reduce the fluid overload in my body (hypervolemia). I was feeling older than I am. 

On 9/18, one month after first hearing about PH, I was in the cath lab getting my pulmonary artery pressure looked at. The cardiologist told me that I had PH (the pressure in my pulmonary artery was higher than it should be), that my body was overloaded with fluid and that I probably have hypoventilation syndrome (I breathe too shallow) due to being overweight. It was a bit overwhelming. The pulmonologist confirmed the diagnosis on 10/6. The PH Specialist confirmed the diagnosis on 10/7. They both told me that I needed to treat my sleep apnea, continue using oxygen 24/7 indefinitely, lose a significant amount of weight, consider moving to a lower altitude (I live at 6,700 feet) and definitely not travel to higher altitudes and keep my sodium intake to <2000mg/day and my fluid intake to <1.5L/day to combat the fluid overload. That was VERY overwhelming.

Thankfully, I was seeing a counselor to help me deal with being chronically ill even before I got the diagnosis of PH. She has been wonderful and extremely helpful. I also was dealing with the possibility of having lymphedema (causing the swelling in my legs) and had to work through the process of getting that diagnosis ruled out. I had to have a nuclear scan done where they inject the radioactive dye between your toes! Thankfully, it sounds a lot worse than it is. No lymphedema, so that's one less thing to worry about.

I have had a lot of questions for all of my doctors since being diagnosed with PH. There are 5 different groups of PH. It looks like I am in groups 2 (PH due to heart issues) & 3 (PH due to lung issues, which are sleep apnea and hypoventilation syndrome). Group 1 is the only type of PH that has specific medications to treat it. It is also the most rare and dangerous type of PH. Every single patient's experience with PH is different than every other patient's experience with PH. There are similarities, but everyone has something unique to their illness. That makes it difficult to treat PH. In my case, since my PH is due to underlying conditions, those underlying conditions have to be treated to make the PH get better. I have to treat my sleep apnea, my obesity, my fluid overload and my oxygenation issues. I'm hoping that if I treat those things, that the PH will get better and/or go away completely. I may have to deal with PH the rest of my life. To what degree, I don't know.

I have spent a lot of time on the phone with the PH Specialist's nurse. I wasn't supposed to see him again until April, but they want to follow up with me. So, I am going back up to Denver next week. The difficulty with having PH due to other illnesses is that no one is quite sure who is supposed to treat and follow up with the patient. It is a heart disease and it is a lung disease. It is complicated. Thankfully, the specialist is going to make sure that I get my questions answered and that I understand my PH as best as I can.

David and I are feeling overwhelmed right now. We are considering moving to a lower altitude if it would be the best thing to do. We still have so many questions. I am hoping that my appointment with the specialist next week sorts a lot of this out. I am looking at doing a Pulmonary Rehab Program 3x/week for 3 months to get me active again. I have basically been sedentary for the last 3 years. I'm hoping to get a portable oxygen concentrator (a machine that makes its own oxygen) so I don't have to bring oxygen cylinders with me everywhere and have to constantly be refilling them. I want to be mobile and get out again. I want to understand what my flavor of PH means to me. What can I do to feel better? What can I do, if anything, to halt/reverse/eliminate PH in my life?

I am going to see the ENT/Allergy doctor this afternoon to help with the constant nasal congestion I have. That keeps me from wanting to wear my CPAP mask at night. Wearing oxygen full time affects your nose and sinuses. What can I do to make sure I comply with wearing oxygen 24/7? I am going to see the sleep disorders specialist tomorrow. I know that being compliant with my CPAP, treating the sleep apnea and reducing the amount of time that my oxygen level is below 91% is crucial. I need to know if I do have the hypoventilation syndrome. I'm not sure if he would diagnose that or not but I'll ask him. And I definitely need to sleep better. Being rested is important, too.

I have a lot of huge lifestyle changes to make. I'm working on making those changes every day. I am looking at every option from surgical weight loss to moving from my beloved Colorado back to sea level (or as close as I can get). Being diagnosed with PH has changed my life. It has changed David's life, too. I am sad knowing that I cannot go back to Waldo Canyon to hike. My goal since I got sick 3 years ago was to get back to Waldo Canyon to hike again. It's at 7000 feet, though, so that is not an option right now. I can't go up to the summit of Pikes Peak, 14,114 feet, and get a "high altitude" donut (they just taste different up there!). Life is different now. I'm relieved to finally have a diagnosis so that I can move forward with my life, but it's slow going right now. I know that, quite honestly, one of my options is to do nothing and just get worse or at least, no better. I don't think I will do that, though. My pulmonary rehab program evaluation is next Thursday. I may be able to start the program on Friday, Monday at the latest. It will feel good to be active again.

The PHA website has been an invaluable resource since hearing about PH. Not only do they provide lots of information but they also provide a lot of support through online chats, telephone support groups, one on one email and telephone support and educational resources. I can't thank the people and other patients on the PHA website enough for being there for me and helping me to navigate through all this since being diagnosed with PH.

Thank you for reading this very lengthy post. I hope it helps you to understand the journey to a PH diagnosis and the affect it has had on my life. I hope it helps someone who needs to be diagnosed or has been recently diagnosed with PH. 

Written by Samantha-Anne Wagoner

The Importance of Caregivers

November is an incredibly important month for pulmonary hypertension, since it is the month where so many in the PH community try to spread awareness everywhere possible! But November is also special to many people who have caregivers, because it is Caregiver Awareness Month as well! A caregiver is defined as a family member or paid helper who looks after the care of someone who is sick or disabled, whether that person be an adult, a child, or an elderly person. A caregiver provides emotional and physical support as much as possible, and their helpfulness, thoughtfulness, and caring can be a blessing to the person being cared for. The following comments are from PH patients after they were asked to share what their caregivers mean to them. It is quite obvious that most of the caregivers play a huge roll in providing comfort for the PHer!

Jen C: Great - we all love our caregivers that are blessed to have them ! My hubby Manny (cg) is my rock - always there in good and bad days when it seems like the rest of the world has walked out on me !

Tiffany G: My caregiver (my fiance Mike) loves and accepts me unconditionally. There is nothing that he would not do for me and the PH cause. He takes me to all of my appointments, helps me understand the Doctors, picks up my prescriptions and eats the diet that I choose to make us more healthy. He also holds me when I am sad, crying and frustrated.

Barbara H: My caregiver who is my husband has been with me ever step of the way during this illness, I am so grateful for his kind, loving care, he has done without to make sure I get my medications and whatever I may need to survive.

Kevin B: Joann, my caregiver does everything for me, days I cannot get off the couch she is their, every doctor's appointment she is their, times I am mad at the world she is their to show me the good in my , when I'm ready to give up she helps me carry on. With out Joann I would not have the strength or courage to make it day to day, with out Joann I could not make it through this terrible sickness.

I want to also mention my son Josh who time after time has helped me through troubled times like when I awoke from passing out to find him laying next to me caressing my arm telling me "it's OK dad your OK" or the numerous times he has helped me while I was having a seizure or the times he has explained what PAH is to a doctor and EMS people that were unaware with what it was. To the day to day chores he does because I cannot. Between he and my wife I would never make it without them. I also have to include you folks my PHfamily and friends because you ALL help me even when your not with me because your always in my thoughts!

Kit B: My caregiver/partner has really stepped up at home where I need it. He cooks more, goes shopping for groceries, and tries to help see that I'm able to eat nutritious food even if I'm unable to cook it! In addition to that, he provides emotional support that others cannot. He never questions my struggles -- he accepts them and we work together to try and fix what we can.

Angie E: My caregiver, my husband, has fought for me through thick and thin and has saved my life so many times when there were too many doctors on the case and he was my point person, not taking "no" for an answer. He is always there when I need him even when I scream and yell because I am so tired of trying to breathe! God Bless Our Caregivers!!

Sylvia T: My caregivers, my husband and son, are always there for me, pushing me when I am down...loving me when I am having a hard day...making me laugh. They cook and clean and pay the bills. I always feel the love!

Bonnie H: My hubby, Brian, is my best friend and caregiver. If I can't do something I want to do, he'll figure it out so I can participate and not get left behind. He designed a garden closer to the house so I can grow my tomatoes and beans something I really enjoy. But just being there to make me laugh helps more than anything. I am loved.

Ruby Nan M: Louis, my husband, does every thing I need and never complains! He does the shopping, he does the cooking, cleans the kitchen, does most of the laundry, mixes my veletri, changes my cassette every night, sorts my pills once a month, etc. And he NEVER complains. I am very blessed. He always tries to lighten my load. He's the love of my life and my best friend and he always brings humor into the situation.

James R: My caregiver is my best friend, through thick and thin, she is also my wife. She never complains, and for that reason sometimes I forget I can be a handful to take care of, She is always there, even when I don't need her to be, She is my one true love and has been for close to 24 years now. I cannot imagine doing things without her, much less her not being a part of my life.

Tara S: My Caregiver/Partner Michael has been a blessing in my life. He has taken over so much of the housework (with a little bit of complaining)  but I know how much he loves me. He has to help me shower. He has to help me change my medicine out every two days. He does it all without complaint. He carries the laundry out of the laundry room for me so that I can put it away if I am feeling up to it and if I am not when he gets home he will take care of it. There is nothing that he won't do for. We are waiting right now for the call for Transplant. It is very nerve wracking. He has switched shifts at work to be home with me at night in case we get the call. We have been together for 7 years. I hit the lottery when I found him.

Alice Marie J: My care giver is my husband Dean, he helps me physically, emotionally and spiritually, he is my best friend, when I finally drop of to sleep I wake listening to him reading the bible to me! He is truly truly truly a gift from the Lord!

Shannon W: My best friend Susan. She has been there from the min I found out and has been there physically,emotionally,and spiritually. She took time to learn about PAH and how to help. The are days she has to keep me on my toes cuz I feel so down.

Neeta P: He knows it when I am ill or well. He knows it when I am blue or pink. He will help when the time is right. That is just when I am in need. This one is for all our caregivers. We are so very blessed to have them in our life. He is the only one who understands what I am going through and does whatever is needed to keep me comfortable, feeling better. On my good days, he lets me do what I can, on my bad days, he does it all and more without a peep, always cheerful and smiling, counting his blessings that I am alive and giving him company. Yes! he too reminds me when I forget to take my meds in spite of the alarm. He is the one who carries all the grocery, whether I accompany him or not, he is the one who is my moral, emotional, physical and spiritual support reminding me at the appropriate moments to be positive, to be thankful and to be happy. Its not how many breaths we take but, how many moments of happiness we have together in life that matters! I thank god for my caregiver every day of my life, for this beautiful gift He bestowed on me as my husband!

Stacey G: My hubby is my true partner in life in all ways. He caregives by giving me emotional support through the many ups/downs of having 2 chronic illnesses. He steps in when I can't and takes care of things to make my life easier, tells me I am beautiful despite my oxygen tubing and a line coming out of my chest and never gives me any worry that he won't be here for me when I need him.

Barbara T: I literally would not be on this Earth had my husband & caregiver, Chuck, given up on me. He took me to 14 different doctors prior to a correct diagnosis.

Lorrie T: I could not live w/o my caregiver! Joy has stood by me all along this crazy ride since dx 2 years ago. When I can not take care of me, she always steps in and mixes my meds. She is the most understanding of what we as patients deal with on a daily basis. I love her so much, she can't be replaced!!!!!

Elaine W: My caregiver helps me out in all situations, no matter how big or how small. I couldn't do it without her, she is special and deserves an award!!

Rozanne C: My caregiver is my partner, the love of my life for over 30 years. He is there for me, supporting me through physical, as well as spiritual challenges. And, I love him more each day.

Jennifer S: My caregiver and loving husband is my rock and the best advocate and partner anyone could wish for. I have no idea how it would face all of life's hurdles without him.

Kim F: My caregiver is my husband and he has been my rock for the last 5 years. He gladly took over all the daily house chores that I can no longer do and he waits on me hand and foot. He also learned how to mix my drugs and does that more then I do. I don't know what I would do without him he has been my best friend for over 30 years but in the last 5 has shown what better or worse really means.

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