Thursday, September 17, 2009

Maree McRae Tells Us About CVID

Singer/songwriter, Maree McRae has had quite the journey making it in the music business and caring for her family. Maree’s son, Stephen was diagnosed with CVID, a disease that affects the immune system, making it hard for Stephen’s body to fight off infection. With a successful debut album, Maree was approached with an offer to take her music on the road but turned down the opportunity since she could not leave Stephen or bring him on the road. Maree ended up taking a break from her career to stay with her son. Now she's back with a recently release sophomore album! The last song on the new album, “Who Knows” was written for Stephen and was given to the Primary Immune Disease Foundation for their World Conference. Want to learn more about CVID and Maree's journey? Keep reading.



How old was your son, Stephen when he was diagnosed with CVID?
The official diagnosis date was last Aug. 2008. Stephen was 16.

Can you explain what CVID is for those who do not know?
CVID is an immune deficiency disease and stands for Common Variable Immune Deficiency

How much research have you done on CVID and where do you start when researching?
You start with the information the specialists give you, and then you’re on your own, being a self advocate in all ways possible, the internet of course is a great one after the specialists.

Since the diagnosis and now, what have you learned about CVID that you were surprised to find out?
The World Health Organization recognizes more than 120 primary immune deficiency diseases. CVID is becoming more common, and the amazing part is how very little the internal medicine doctors are actually trained in this area. If they were, it would be extremely helpful in earlier diagnosis when a person is continuing to get infections and to get them the right diagnosis and testing so to improve the quality of their lives and not risk permanent damage, that so often happens when the internal medicine doctors fail to test for the disease.

What kind of treatment is there?
The usual treatment is to start with continuous antibiotic therapy, but if that fails to control the infections enough, than the plasma infusions are the only known medical course of action.

Is CVID a disease that needs to be attended to everyday, how severe is this disease?
CVID risks long term damage with scar tissues to the membranes and organs if the infections are allowed to continue. This can be life threatening, each individual’s infections and IGG levels are different, so different case to case.

What are the challenges that not only Stephen faces but the family faces with CVID? Stephen has to go in every 3-4 weeks and have IV’s of blood plasma infused into him for around 5 hrs. each time. That’s a lot for a teenager to deal with. A kid should be out having fun, not having to worry about always being sick…but hey, life isn’t perfect, “should be’s” are illusions. For the family, we’ve endured 16 years of ER visits and horrible heartbreak watching him sick so long. It’s an awful thing to watch our loved ones ill, especially a young child.

After being offered to go on tour with your music, how long did it take you to come to the decision to not take your son on the road and go and also not go at all?
I had to decide within a year after my debut album, “I Won’t Settle for Less” came out to not sign with Masciolli, but that decision was done within a day of being made a mgmt offer with them. I really just couldn’t leave my young son, I’m his mother, and really no one else could “know” him, “know” his medical issues like I knew them. It’s tremendous responsibility being a parent, a good parent I should say, and having a debilitating illness with NO diagnosis at the time, was the worse thing.

When and where did you write the song, “Who Knows” and can you talk about everything that you were thinking about when you wrote it?
I think I was working on “Who Knows” for the last ten years! All of the story was built over his whole life and all the heartbreak of an illness and suffering. But as far as consciously actually sitting down and writing it…I wrote it on the way out to Nashville on the plane when I was on my way to start the recording process. There is extreme emotion in the song, but my goal was to not write a song that would be a downer for him if and when he heard it. It’s already hard enough on him and I’m sure he already thinks so much about all he’s been through and continues to deal with. That’s why I changed the last line from “I pray you will finally get better someday” to “you will finally FEEL better someday.” When I wrote it the first way mentioned, it sounded as if he wasn’t okay as he is, but changing it to FEEL better…well, who wouldn’t want someone to feel better?

How has your music changed after the diagnosis?
“Urgency” is the title cut and written after his diagnosis, actually the day of his diagnosis in the parking lot. My music has changed to being completely heart driven writing, no fluff, appreciation of every moment that we are given and expressing that we never given a guarantee of another day of life. That is HUGE and of course, comes across in the expression of my music, and particularly on this album.

What are you doing to help other families who are dealing with CVID?
With every show, people are tapping in to the meaning of the title cut, “Urgency” and not as much just about CVID, but also just about sharing their experiences with me about their own stories of chronic illness. “Urgency” was given out at the silent auction at the world meeting with the Primary Immune Deficiency Foundation in June, I hope that helps another going through the same thing when they hear it.

Have you attended many Primary Immune Disease Foundation events?
Of course, they actually just had an event in Denver this past summer. I try to go to what I can, and also intend to become more involved with an outstanding non profit organization called, “Advocacy for Patients with Chronic Illness.” It’s a wealth of information and support for anyone dealing with long term illness.

What are you doing locally and nationwide to spread awareness about CVID?

At the moment, with the busy release of “Urgency” and planning the touring, I am just putting out large posters talking about it when I play and donating 15% of my sales to the organizations that help the patients. I would love to take “Urgency” and “Who Knows” to larger levels when I have time and go to the seminars and speak to people. But I do feel at every show, I am given an extraordinary opportunity to help others through my music and talking about where I’ve come from in relation to the disease and why I wrote the songs.
People come to me in flocks, really, just sharing their own stories-wow, what a feeling of success that is for me. These songs are doing everything they should right here and now.

4 comments:

markincleveland said...

Why don't you have your son's infusions at home? I been on IViG for the past 28 years, 23 of them have been on home infusions. I have two teenagers also have CVID, both are doing quite well. My daughter will attend an Ivy League University in the fall after completing her year of service as a participant in City Year. My son is president of his college's student government this year. He attended boarding school in the east and we arranged for him to get his infusions on campus.

Make no mistake, this isn't always easy, but then again it isn't the end of the world.

Maree said...

Our insurance does not give us an in home option. The only home I'm aware of at home is the sub cutaneous, which we have not decided to do at this point. No, it's not the end of the world as long as he will get his infusions. With no health care reform passing yet regarding acceptance for coverage with pre-existing illnesses, than, yes, it's a serious problem.

Les and Ursula Holleman said...

Our daughter is about to be 15 and has done subq since she was 11. For the last 2 years she has stuck herself each week. She also deals with 3 other diagnosis but still loves to play in the band, enjoy high school and ride her horse. She had horrible IV reactions and we had to go every 3 weeks and there were lots of premeds. She is enjoying Starbright chat network now and hopes to be a vet one day. She was diagnosed when she was 2.

hixchixpix said...

I have only recently been diagnosed at 36 after several years of being misdiagnosed for the lack of knowledge and/or as you mention, just the lack of someone paying attention to what I have been saying. I now fear, my son, has the exact thing and he is only 10. I am wondering, since I have been advised at this late stage, my quality of life would be best with infusions, if there is may be some way I can help raise not only awareness, but money for this expensive treatment as well. I am desperate for ANY feedback or just a step in the right direction.
Since my line of work was being an antique picker, I really have been gathering all of my hoarded possessions to do an annual Antique Market in the Fall but combine it with some sort of fund raiser/awareness type event. Any suggestions.........
Thank you kindly.
I am scared but I have never let anything scare me or intimidate me into quitting. I just know it is time to slow it down for the rest of a good life....