Allergy & Asthma Network Mothers of Asthmatics (AANMA)

AANMA Member Voices: Why We’re Still Here

The phone rings, e-mail bleeps – each day it’s someone new with a familiar story or concern. They need help or a listening ear much as founder Nancy Sander sought 25 years ago when she sat down at her kitchen table to write the very first issue of AANMA’s newsletter, The MA Report.

These stories are real and depict families going through asthma and allergy journeys at various phases. Any of them sound familiar?

Life with Asthma in America: 2010

* My son Davis is 4 years old. The first time we went to the emergency room was when he was 8 months old. We visited it several more times before we were given a nebulizer to use at home. At age 2 he was tested for allergies and found to have an allergy to ragweed, which contributes to his symptoms. This fall, he had a bout with croup, and if it hadn’t been for the nebulizer, we would have spent another night in the emergency room. – Casey T.

* I noticed that my son had asthma when he was about 3 months old – however, the doctor insisted that children that age could not be diagnosed as having asthma. When he was 2, they finally called it what I thought it was. After so many emergency room visits, we were finally given a nebulizer when he was about 7. We’ve only been to an emergency room twice for his asthma from that time. He’s an energetic 12-year-old seventh grader. He’s an aspiring pastor, veterinarian and masseuse; an Honor Roll student and loves all sports, especially tennis and football. – Ladonna S.

* My husband has had asthma all his life. He was in the ICU several times as a child, but he didn’t have another attack until two years ago. He was rushed to ER after paramedics tried to help him, and it’s a miracle he’s alive.

I was researching asthma on the Internet and came across AANMA’s website. It felt like a sign! What a wonderful way to help people. Before my husband had his attack, I was very ignorant on the issue, even though I knew his childhood history. It’s so important for people to understand the life of someone with asthma. You never know when you’ll be in a position where your knowledge is what will save their life.

When I got to ER that night, I was told it looked like my husband was in anaphylactic shock. He went into cardiac arrest and was placed on life support. I have the discharge documents, physician summary, allergy tests etc., and I go through those, dissecting each word. When all was said and done, they said they didn’t know what caused him to go into respiratory failure. They left it at that, and told him to take Singulair and Advair every day.

Personally, I don’t accept that answer. I feel there are unanswered questions and areas that need to be looked into more. I also don’t feel he should have to take high levels of Singular and Advair for the rest of his life. I don’t want him living in fear the rest of it, and I don’t want our daughter growing up in fear either. So I’m taking this into my own hands.

Now that I’ve joined AANMA, I look forward to being a part of a change and hopefully helping someone along the way. – Misty M.

* I’m a single parent of three boys ages 24, 19 and 9, and the grandmother of an 8-month-old little boy. As a child I had severe asthma – I went through everything from home remedies (my mother was from the South) to hospital treatments. As time went on, I thought I grew out of it – only to find out, after giving birth to my second son, that my asthma had returned. I went untreated for some time, using over-the-counter meds and sharing meds from family members. After giving birth once again, to my last son, my asthma and allergies kicked into full swing.

My sons Jeffrey, Brandon and Kristopher have asthma. Each child has been hospitalized – there have been so many ER and hospital visits, two stays in the ICU and now, at 8 months, my grandson is being treated as well. Being a single parent has its issues and struggles, but to have a condition that’s gone from generation to generation can be discouraging. There have been times when we’ve gone untreated because of the cost of medications and not having insurance. In the past year I’ve been hospitalized five times and have gone to the ER eight times. I continue to not let my condition hinder me from doing anything that I desire to do. I have also instilled this in my boys – I tell them to not let asthma stop them. – Tina W.

* I can’t believe it was 17 years ago that I had NO clue about asthma and found your organization by accident. Your help was invaluable to me and my boys.

My son Michael (who is now 17 – can you believe it!) is a varsity member of his high school football team and the track team (discus and shot put) and is a great success story in controlling his asthma.  He is also a great public speaker and writer.

Robert (14) started high school this fall.  He is on the HS football team and also plays AAU basketball. — Maria M.

* My 3-year-old son, Matthew, has just been put on Pulmicort twice daily for at least a year, and he’s on Singulair daily as well. It started in September 2009 when we entered him in a nursery school. From that time until February 2010, we had four emergency room visits with him, multiple sicknesses (colds and viruses), three rounds of oral steriods and antibiotics. Through all of this, I was taking him to his pediatrician, but he kept getting sick once we would bring him back to school. The poor little guy didn’t know what it felt to feel well for more than two weeks! Very rough winter for us.

We were sure there had to be something more we could do for him. Finally, I took him to an allergist, and she was appalled that his pediatrician didn’t suggest a specialist. I don’t want other parents to go through what we’ve been through these few months. These babies shouldn’t have to live like this. – Stacey P.

* I joined “Mothers of Asthmatics” in 1985 when Nancy’s newsletter was featured in a local newspaper. My daughter, born 1982, had severe asthma and I was desperate for info.  No one can understand the helplessness I felt. Doctors gave her drugs, but never shared practical information. The MA Report newsletter was a godsend.  I looked forward to each issue and finally felt I was making progress in dealing with this condition. I would go to the doctor with an item from the newsletter and they would say, “Hey that’s a good idea. I purchased products recommended and was able to be an advocate for my child. I shared this info with so many mothers over the past 25 years. Every time I helped another mother, I felt I was “paying forward” the help I had been given. My daughter  is now a Physician Assistant and my son is a health teacher. They still have asthma. Bless you all for making a difference in our lives!!! — Nancy M.

* Asthma is common on my side and my Olivia’s paternal side of the family. My mother and I had it throughout childhood – I recall being hospitalized with asthma once or twice – with some occasional attacks during adulthood. Olivia has chronic asthma. Doctors believe it’s caused by a lung obstruction or abnormality. This makes her more prone to pneumonia. She’s been hospitalized four times with chronic pneumonia and asthma. The last hospitalization, in May, was a very close call for her. She was hospitalized for about two weeks – the longest she’s ever been in the hospital. Right now on a much stronger medication, and she’s doing great. – Canal B.

* I’m the parent of a beautiful 4-year-old little girl named Megan who’s been struggling to breathe her whole life. She has reactive airways and chronic croup. We spend several days each month in the emergency room and many overnight stays. I wish I could say that I’ve learned enough about my daughter’s illness to help make life easier for her, but unfortunately that’s just not the case.

I read everything I can get my hands on, but that still doesn’t help me figure out what exactly causes her attacks. We live a life of uncertainty. As a parent I wish I could do more than just give her medication and hold her hand when she hurts. Please keep my precious daughter in your prayers. Our family needs all the help we can get.

Our daily life consists of frequent breathing treatments and other meds to help keep her airways open. She takes steroids daily, and the medication dries out her face and causes a rash. The medication also makes her uncontrollable. She can’t sit still and has the attention span of a second. I know that the behavior is medication-related, but that doesn’t make it any easier to deal with. I just wish for her sake that I didn’t have to constantly give her medication that makes her so hyper and makes her heart race. You can tell sometimes that she’s so tired but her mind and body just won’t let her rest. I often wonder what she would be like if she were in control of her actions.

No matter what cards my daughter was dealt, she’s one of the sweetest, kindest, loving little ones that I have ever had the opportunity to meet. She’s always cracking jokes and smiling. She would be happy on a dirt pile as my mother would say. She’s always is in a good mood, even if she is moving at supersonic speed. – Melissa W.

* First of all, I must tell you what a comfort AANMA has been to me throughout the years.  Like many moms of children with asthma and allergies, I felt helpless as the first few years of my oldest son’s life were marked with ER visits, mystery illnesses and questions, questions, questions!  As a journalist, I’m naturally a copious note-taker – I began to attack my son’s ill health like a story that needed unraveling.

Somewhere along the way, I found AANMA.  The source of my information is very important to me – I know I can always count on AANMA’s newsletters, magazine and website to contain cutting-edge information.  I’m happy to report: 10 years after discovering he was diagnosed with asthma, my son had perfect attendance at school this year, and, even as I type, is away at church camp for one week in the mountains (armed with notes and medications for the camp nurse, in case he has a flare-up).  LIFE is possible with asthma and allergies!

Soncee P.