new mission

WOW!!! I am overwhelmed by the responses I am getting from my blog! I can’t believe it. I never thought I would get this many viewers, especially after only four blogs in less than a week! Its amazing!

My main goal of this blog was to basically use this as an online diary. To share my thoughts. But in the space of a few days, it has turned into so much more than that!

I knew there was a lack of understanding about CF. I want to change that.

I want to help provide more support for families. We live in regional Australia. I am a member of a state CF organisation (CFWA) who do fabulous for patients and their family members. They do Mum’s pamper days, sibling camps, constant fundraising. But there is a problem. While its available to us, most of it in the capital city of Perth…4-5 hours away!

I’m not saying that they havent done anything for us. They gave us a $600 nebulizer when my son was diagnosed. They also apparently fund one trip to Perth a year. We have yet to take them up on this offer though.

But I am noticing more and more that there isn’t much support for CF families. When our son was diagnosed, we were told not to turn to other countries for information, as the treatments and experiences a vastly different. However, any Australian website I have looked at, the forums havent been used in months, sometimes years, and I have found myself turning to international websites for my questions/support.

So there lies my mission to provide support for Australian (and even international) families. Even if it is just to read along and know that you’re not alone!

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One thought on “new mission

  1. Hi Bellab85,

    I heard many of the same things when Elina was diagnosed. We were told not to do any of our own research – we were also told not to expect a cure. Like you, in Canada we have different treatments than other countries. We do not use the vest – they do in USA, also the treatments in Sweden are based allot in physical therapy, there are also differences between countries in the treatment of staph and the use of antibiotics.

    While I think it is important to listen to your doctor, as a parent and as a patient advocate you need to be able challenge their opinion from time to time, or simply for your peace-of-mind understand why they choose one treatment over another.

    I also believe the more we learn from other countries, the more we empower ourselves as caregivers to our child, we can choose to incorporate pieces of what we learn into the regime recommended by our doctor, or not.

    If I did not do my own research and if I did not get actively involved in the CF community, I would be living in despair about the forecast for my daughter’s future. It is because I am connected to CF moms, CF dads, Cysters and Fibros that I have so much hope for the life my daughter really can lead. It is also my own research that has given me the knowledge that the money raised for Canadian Cystic Fibrosis is being used to fund research that has a real hope in changing the course of this disease. I’m not about to take the information I’ve learned and start self treating – but in the future I may get Elina a trampoline, like they use in Sweden. http://www.bloomingrosefoundation.org/wp-content/uploads/2009/10/Trampoline-treatment.pdf

    Being good patient advocates for our children is the best way for them learn to be advocates for themselves when they grow up, and with CF that’s something they are going to have to be.

    Listen to the treatment advise prescribed by your doctor, but don’t be afraid to ask questions and challenge them, it is your right. Also – CF can really suck sometimes – what’s the big deal if you have a few cyber friends that understand therapy, enzymes and worry. CF nurses and doctors don’t have CF kids (well mine don’t), they can provide great medical advice, but from my personal experience know very little about the constant worry and heartache of being a CF mom.

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