Claire & I visited the Pathology Centre this week to have a sample of her blood taken for the purpose of determining whether she is eligible to participate in an Intra Nasal Insulin Trial at the Royal Melbourne Hospital.
So what is involved in the clinical trial? To determine whether the treatment of an intranasal insulin spray vaccine will help prevent type 1 diabetes in at risk individuals.
Who is eligible to participate? The Screening Phase involves taking a sample of blood from anyone who has a close family member (blood relative) with type 1 diabetes between the ages of 4 - 30.
Why test people related to those who have type 1? Because genes play a major role in type 1 diabetes and people with a close family member who is type 1, have a 10-15 times greater risk of developing it than those without.
What is involved? The blood sample is tested for antibodies. These antibodies are proteins made by the body's immune system. If present, it might indicate that the beta cells are undergoing damage. These antibodies can be found in the blood years before any symptoms occur. Individuals without symptoms but who test positive for antibodies, are considered to be in what they call the pre-clinical stage and have a window of opportunity for preventing type 1.
However, only a small percentage (2-3%) are positive for antibodies. To date 9,115 people have been screened
and 93 relatives are now in the trial. A further 27 participants are still needed to complete the trial. The likelihood that Claire will test positive for these antibodies is minor. Even if she doesn't test positive now, it doesn't mean she can't develop type 1 later, so if we want to, we can have her tested again in a years time.
I put this screening test off for a while because I went through a gamut of emotions that I was unprepared for.
It's hard to explain but perhaps I just needed time to come to terms with even having to contemplate my healthy daughter living with type 1. That's a very hard thing to think about. But in the end, do I want to stick my head in the sand and hope that my daughter doesn't develop this chronic disease? Absolutely not. I don't want to regret not having her tested in years to come, knowing that I could have possibly done something to help prevent it.
I also believe that participating in a worthwhile trial such as this one, that could help prevent type 1 diabetes, needs supporting.
Claire has just turned 5, so I tried to explain as best I could why she was having the test and she said that she understood. Then I told her that it would hurt a bit, like a big mosquito bite...hmmm, I hope she forgives me for that one. She asked how long it would hurt for and I said that I wasn't sure but not too long. She didn't protest, so trusting in us are our children. So off we went to pathology, me hoping she would cope with the pain, and her, oblivious to what was coming. But I needn't have worried. She was so brave and even insisted on looking. I could tell that it hurt like hell as her eyes started to well up with tears but she didn't cry and stayed so still. At the end, the nurse said, "Give us a thumbs up if you're okay". They where so impressed.
We'll get the results in 4 to 6 weeks time....
I hope needles never become part of your daily routine precious girl...
So what is involved in the clinical trial? To determine whether the treatment of an intranasal insulin spray vaccine will help prevent type 1 diabetes in at risk individuals.
Who is eligible to participate? The Screening Phase involves taking a sample of blood from anyone who has a close family member (blood relative) with type 1 diabetes between the ages of 4 - 30.
Why test people related to those who have type 1? Because genes play a major role in type 1 diabetes and people with a close family member who is type 1, have a 10-15 times greater risk of developing it than those without.
What is involved? The blood sample is tested for antibodies. These antibodies are proteins made by the body's immune system. If present, it might indicate that the beta cells are undergoing damage. These antibodies can be found in the blood years before any symptoms occur. Individuals without symptoms but who test positive for antibodies, are considered to be in what they call the pre-clinical stage and have a window of opportunity for preventing type 1.
However, only a small percentage (2-3%) are positive for antibodies. To date 9,115 people have been screened
and 93 relatives are now in the trial. A further 27 participants are still needed to complete the trial. The likelihood that Claire will test positive for these antibodies is minor. Even if she doesn't test positive now, it doesn't mean she can't develop type 1 later, so if we want to, we can have her tested again in a years time.
I put this screening test off for a while because I went through a gamut of emotions that I was unprepared for.
It's hard to explain but perhaps I just needed time to come to terms with even having to contemplate my healthy daughter living with type 1. That's a very hard thing to think about. But in the end, do I want to stick my head in the sand and hope that my daughter doesn't develop this chronic disease? Absolutely not. I don't want to regret not having her tested in years to come, knowing that I could have possibly done something to help prevent it.
I also believe that participating in a worthwhile trial such as this one, that could help prevent type 1 diabetes, needs supporting.
Claire has just turned 5, so I tried to explain as best I could why she was having the test and she said that she understood. Then I told her that it would hurt a bit, like a big mosquito bite...hmmm, I hope she forgives me for that one. She asked how long it would hurt for and I said that I wasn't sure but not too long. She didn't protest, so trusting in us are our children. So off we went to pathology, me hoping she would cope with the pain, and her, oblivious to what was coming. But I needn't have worried. She was so brave and even insisted on looking. I could tell that it hurt like hell as her eyes started to well up with tears but she didn't cry and stayed so still. At the end, the nurse said, "Give us a thumbs up if you're okay". They where so impressed.
We'll get the results in 4 to 6 weeks time....
I hope needles never become part of your daily routine precious girl...