Allergy & Asthma Network, Severe Asthma Foundation to Join Forces

VIENNA, VIRGINIA (FEB. X, 2018) – Allergy & Asthma Network, the leading national patient education and advocacy organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions, and the Severe Asthma Foundation are joining forces to raise awareness, knowledge and research in severe asthma.

The two nonprofit organizations will combine resources to bring to light the prevalence of severe asthma and help educate patients, caregivers, healthcare providers and advocates about this debilitating, life-threatening disease.

“We are proud to unite with the Severe Asthma Foundation to support those affected by severe or uncontrolled asthma,” says Tonya Winders, President and CEO of Allergy & Asthma Network. “Severe asthma is often undiagnosed or misdiagnosed, and by leveraging our strengths and expertise, we can empower patients to get a complete diagnosis and develop treatment and management strategies alongside their doctor to achieve the best outcomes.”

Asthma affects more than 334 million people globally, including 25 million in the United States. According to the U.S. Centers for Disease Control and Prevention (CDC), 10 Americans die every day from asthma or asthma-related complications.

The Severe Asthma Foundation estimates that 7 percent of asthma patients worldwide experience severe symptoms or are undiagnosed with severe asthma. Severe asthma involves common symptoms of the disease – chronic coughing and wheezing, difficulty breathing and chest tightness – but they occur at a higher frequency and intensity despite the use of high-dose controller medications.

“All asthma is NOT the same – it’s a multifaceted disease and it’s important that patients with chronic, recurring symptoms consult with their asthma specialist,” says Donna Jean Matlach, President and co-founder of the Severe Asthma Foundation and a severe asthma patient herself.

“By joining forces with Allergy & Asthma Network, the Severe Asthma Foundation will be working closely with a like-minded organization, reaching out globally to raise awareness of severe asthma and discover better ways to manage and treat the disease – and perhaps one day find a cure,” Matlach says.

“We look forward to working with Allergy & Asthma Network to encourage patients to be their own best advocate – and to never give up striving to live their best life possible,” adds Brenda Young, Vice President and co-founder of the Severe Asthma Foundation and also a severe asthma patient.

The Severe Asthma Foundation was founded in 2015. With severe asthma increasingly recognized as a major unmet need, the foundation’s mission evolved into working with patients, healthcare providers and researchers to increase recognition of the disease, provide educational resources and fund research.

The Severe Asthma Foundation’s website – SevereAsthmaFoundation.org – will remain in operation. Allergy & Asthma Network’s website is located at AllergyAsthmaNetwork.org.


About Allergy & Asthma Network


Allergy & Asthma Network is the leading national nonprofit organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions. Allergy & Asthma Network specializes in sharing patient-friendly, medically reviewed information through its award-winning Allergy & Asthma Today magazine, E-newsletter, AllergyAsthmaNetwork.org website and numerous community outreach programs.

Follow Allergy & Asthma Network on Facebook and Twitter @AllergyAsthmaHQ. Join at AllergyAsthmaNetwork.org/join.

 

 

Amber

My name is Amber, I have been a severe  I’m an asthmatic. I got diagnosed at 12 years old in 1994.I’m currently 34.  I have been a severe asthmatic since 2008. What changed? I don’t know I saw the wind changed directions or something. My usual spring attack hit and it still hasn’t stopped, it’s been 8 and a half years so far. Let me tell you a little about me.
Before the asthma ruled my life I was a firefighter paramedic. I saved lives and helped folks like me now. I rode horses, I hunted, fished, camped, 4 wheeled, trained dogs. I helped my mom and granny out. My mom was battling breast cancer. I was a normal woman I was a mom and a wife. I still am a mom and a wife to a different husband. I lost my career and my independence. I’m now tethered to an oxygen machine, like many of my patients were. I’m a professional patient now, I spend most of my time shuffling around to doctors appointments and trying to fight for social security because I can’t work anymore. I tease that I own half of wal mart pharmacy and I’m allergic to the other half of it, and all of the folks in the pharmacy knows me by name. Now let me tell you about living with this horrible disease that has stripped my freedom, and many more peoples freedom.
First off, what is asthma? We know the textbook definition, the airways inside the lungs constrict, or get smaller, causing trouble breathing. Sounds miserable doesn’t it? My definition is this. Take a coffee stirrer straw, quarter it, take that quarter and cut it in half and breathe through it, all the time. That’s a good day. Now a bad day. Take that small sliver and cut it in half again and breathe through that. Now we’re talking. That’s what breathing with asthma is. Sounds cruddy huh? It is. Now an amazing day is when you actually have the regular quarter of the straw! Whoop! Top of the world right there! Then you decide to go to Walmart and get your huge stack of medicine from all of the doctor appointments and some bozo is wearing perfume. Yep now we are in the er. It changes that fast.
Now a little about my asthma. Because it’s me and I can’t be normal, I mean I’m always the oddball! So I have severe persistent, steroid resistant, cough variant asthma compounded by Ehlers-Danlos syndrome. Do What?! I know it’s a mouthful and you’ll need an inhaler by the time you spit it out. So basically I have severe asthma, that’s really hard to control, that steroids don’t help with very much, that causes me to cough all the time and my connective tissue disorder has attacked my lungs also and has screwed it all up to. Yep sounds about right. Ehlers Danlos Syndrome or EDS is a genetic connective tissue disorder that affects collagen, so anywhere there’s collagen has the potential to screw up. Guess what’s in the bronchioles, yep you guessed it collagen. So basically my lungs are double jointed also. Joy right. So that makes the asthma twice as hard to treat and control. Because of all of this I rarely wheeze, and I hide my symptoms very well. My pulse ox readings typically will be within normal limits, as will my pulmonary function tests. My signs and symptoms typically are rattling when I breathe, barking when I cough, cyanosis (blue or purple), and very tight lungs when you listen to my lungs and stridor or whistling through my throat.  When I get really bad that’s when it will effect my speech and that’s usually when I go to the ER. Most Er’s have NO idea how to treat me or my type of asthma and sends me home still speaking in 2 word sentences because my pulse ox is 98% even though my lips are blue, my fingers are purple and my lungs are completely locked up. I went and did a walk test in March expecting to pass with flying colors because it’s me and nothing ever works right with me and ended up leaving on oxygen. I’m now on oxygen 24 hours a day.
So how has this affected my daily living? Well I think you can probably guess if you have read all the way to here. I now have a shower chair because I pass out in the shower without it because of the exertion, I have gotten to where if I try to cook I’m gasping and blue and dizzy. On bad days trying to even go to the bathroom can cause me to passout. Any type of smells flares me up. Any type of exercise does also. I finally got my handicap decal for the car to help with walking at stores, talk about a bust to my pride. Cleaning is a huge chore and there are no products I can use anymore that doesn’t cause problems. I look back at my lost career and weep, that’s all I want to do is go back on my ambulance and help folks like me, not live this crappy life that I call a life. I’m not even a piece of a person I was. This horrible disease took everything from me and I hate it. I hate what it has did to me and I hate the disease.asthmatic since 2008. What changed? I don’t know I saw the wind changed directions or something. My usual spring attack hit and it still hasn’t stopped, it’s been 8 and a half years so far. Let me tell you a little about me.
Before the asthma ruled my life I was a firefighter paramedic. I saved lives and helped folks like me now. I rode horses, I hunted, fished, camped, 4 wheeled, trained dogs. I helped my mom and granny out. My mom was battling breast cancer. I was a normal woman I was a mom and a wife. I still am a mom and a wife to a different husband. I lost my career and my independence. I’m now tethered to an oxygen machine, like many of my patients were. I’m a professional patient now, I spend most of my time shuffling around to doctors appointments and trying to fight for social security because I can’t work anymore. I tease that I own half of wal mart pharmacy and I’m allergic to the other half of it, and all of the folks in the pharmacy knows me by name. Now let me tell you about living with this horrible disease that has stripped my freedom, and many more peoples freedom.
First off, what is asthma? We know the textbook definition, the airways inside the lungs constrict, or get smaller, causing trouble breathing. Sounds miserable doesn’t it? My definition is this. Take a coffee stirrer straw, quarter it, take that quarter and cut it in half and breathe through it, all the time. That’s a good day. Now a bad day. Take that small sliver and cut it in half again and breathe through that. Now we’re talking. That’s what breathing with asthma is. Sounds cruddy huh? It is. Now an amazing day is when you actually have the regular quarter of the straw! Whoop! Top of the world right there! Then you decide to go to Walmart and get your huge stack of medicine from all of the doctor appointments and some bozo is wearing perfume. Yep now we are in the er. It changes that fast.
Now a little about my asthma. Because it’s me and I can’t be normal, I mean I’m always the oddball! So I have severe persistent, steroid resistant, cough variant asthma compounded by Ehlers-Danlos syndrome. Do What?! I know it’s a mouthful and you’ll need an inhaler by the time you spit it out. So basically I have severe asthma, that’s really hard to control, that steroids don’t help with very much, that causes me to cough all the time and my connective tissue disorder has attacked my lungs also and has screwed it all up to. Yep sounds about right. Ehlers Danlos Syndrome or EDS is a genetic connective tissue disorder that affects collagen, so anywhere there’s collagen has the potential to screw up. Guess what’s in the bronchioles, yep you guessed it collagen. So basically my lungs are double jointed also. Joy right. So that makes the asthma twice as hard to treat and control. Because of all of this I rarely wheeze, and I hide my symptoms very well. My pulse ox readings typically will be within normal limits, as will my pulmonary function tests. My signs and symptoms typically are rattling when I breathe, barking when I cough, cyanosis (blue or purple), and very tight lungs when you listen to my lungs and stridor or whistling through my throat.  When I get really bad that’s when it will effect my speech and that’s usually when I go to the ER. Most Er’s have NO idea how to treat me or my type of asthma and sends me home still speaking in 2 word sentences because my pulse ox is 98% even though my lips are blue, my fingers are purple and my lungs are completely locked up. I went and did a walk test in March expecting to pass with flying colors because it’s me and nothing ever works right with me and ended up leaving on oxygen. I’m now on oxygen 24 hours a day.
So how has this affected my daily living? Well I think you can probably guess if you have read all the way to here. I now have a shower chair because I pass out in the shower without it because of the exertion, I have gotten to where if I try to cook I’m gasping and blue and dizzy. On bad days trying to even go to the bathroom can cause me to passout. Any type of smells flares me up. Any type of exercise does also. I finally got my handicap decal for the car to help with walking at stores, talk about a bust to my pride. Cleaning is a huge chore and there are no products I can use anymore that doesn’t cause problems. I look back at my lost career and weep, that’s all I want to do is go back on my ambulance and help folks like me, not live this crappy life that I call a life. I’m not even a piece of a person I was. This horrible disease took everything from me and I hate it. I hate what it has did to me and I hate the disease.