Archive for Diabetes hope

A Time For Reflection

Devoted readers,

I apologise forthwith for the lack of updating of this page, but my life, as Kate and Lance’s, has been filled to brimming with events and occurrences. My dearest nephew has been in horrible pain, and Kate is trying to cope on little sleep and a life almost devoted to D and PN.

Please, send your wishes on to them, and pray that relief will soon be at hand.

I want to reflect back on what has been a trying time for Kate and Lance. Their tireless work throughout this year to prove to doctors that PN can exist in a young child has resulting in help from many of you, for which I thank you all. I will shortly write a more detailed post, when I am not knee-deep in Carbon Nanotubes and trying to sort out plagiarising students.

We hope for a cure to come swiftly to aid all of us, and hope for the best for Kate and Lance.

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A rant on modern medicine

I’m sorry I’ve been a little slack in keeping everyone up to date here on Kate and Lance’s blog, but I’ve been a little caught up in a few other things and have just found some time to sit down.

Things have not been going well for my sister-in-law in the north. She and Lance have been racing around trying to find an answer… any answer for Lance’s pain, which no doctor seems willing to believe is Peripheral Neuropathy. It’s at times like this we wish that modern medicine would stop thinking that every person fits into the categories written about in their textbooks.

Life is not identical for each of us. We are not exposed to exactly the same conditions as any other person every day, and even then our bodies respond to things differently. Allergies and intolerances are a prime example of this, and the varying degrees people may be afflicted with such debilitating illnesses as Diabetes, Chronic Fatigue Syndrome, and Fibromyalgia, as well as even things such as stress, anxiety, and depression, means that no doctor can just look in a book, point to a word and say “You have this!”.

It is imperative that Western Medicine remembers to think laterally and logically, combine all factors, and think about the exact conditions that the person is presenting with. If a child is crying every night and requiring 24 hour care to try to ease his pain; if a child can’t feel a pin being forced into his foot; if a child has continual burning sensations in his legs, then that child is probably not making it up and attention seeking.

As you can tell, I am seething from the news Kate has been telling me. It is disgraceful and disgusting some of the medical advice she has been given, including “just ignore it”, “it’s growing pains”, and “it can’t be neuropathy, he’s too young”.

It is good advice for all persons to remember, don’t just take your doctor’s word each time. Ask for a second opinion if you don’t believe what they’ve said is the case. Go to another doctor in your town, or, if you have to, travel. Find out who is the best person for your symptoms who might be able to help, and demand to see them. Do not just accept defeat and that you’ll just have to put up with anything.

Be bold, be strong, and be well.

Janek xx

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Exciting News

Guest Post by Janek!

Progress is always slow coming. We have been waiting for so long to find a cure for Diabetes, in any form.

Today, another step has been taken: Student’s Insulin Discovery

No, it isn’t a cure, but as science begins to understand how insulin works. And with discoveries like this, science can continue to work on both treatment and towards a cure. Now, more than ever, is a time to consider your donations to JDRF; and Diabetes Australia. If we can fund more research, we can find that cure!

Also, don’t forget November 14 is World Diabetes Day. That’s two days before my birthday. Impressive, no?

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Suffer The Little Children…

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.  

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump.  When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport. 

.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      totally  I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

 I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children..."

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

  • Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

 Vote for whomever will give you a better Health Care System, America!

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Thank You, Squidoo!!

Ten days ahead of schedule, Squidoo have already fulfilled their promise of an $80 000 cash giveaway to many worthy organisations! 

Five percent of the overall votes went to the Juvenile Diabetes Research Foundation, with each vote earning a $2 donation from the amazing team at Squidoo.

Considering that the voting closed so early, approximately $4250 is certainly a tremendous effort!!

(Exact amounts to be donated will be published on the Squidoo website when the final counting is completed.)

Good Job, Everybody!!!

Good Job, Everybody!!!

Considering that Lance and I sell jellybabies each year for $2 per unit, I can assure you that achieving anywhere close to a four digit number in a two week period is a mammoth accomplishment.

Just through word of mouth, an email here, a post-on-a-blog there…..WE ALL DID JDRF PROUD.

Oh, by the way, you CAN continue voting over at Squidoo if you are at all interested in how much we could have raised by 15 October, (for bragging rights only.)

On behalf of JDRF (Australia), THANK YOU SO MUCH, Squidoo, for your incredibly kind offer, that touched so many different charities and in some way, big or small, made a difference.

(Squidoo have always been exceptional supporters to Type 1 Diabetes by providing much needed funding for cutting edge research.) 

 To all who voted, you already know that you are smokin’ hot!

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We Need Your Vote!

Our friend, Cory sent me a fantastic email today. 🙂

 Squidoo, an online organisation that provides phenomenal financial support to charities, are offering a

$80 000 giveaway to many worthy organisations, JDRF INCLUDED!

I am using this post to ask you to help Squidoo, “show us the money!”

You have the power-simply by clicking on Juvenile Diabetes Research FundSquidoo will donate $2 on your behalf!

The most exciting part of the Squidoo Offer, is that JDRF are in the running for an $80 000 donation, if enough people get behind this incredible gesture and VOTE.

Please bare in mind, that the rules do stipulate that you may only vote ONCE-if you do vote more than once, your valuable vote will be deleted.

Do you have a blog? Or a long list of contacts who would love to get involved with helping kids like Lance?

 You can help out AGAIN!

Simply send the Squidoo link to your friends, and ask them to participate! You don’t have to join up or provide any personal details, it’s just a matter of ticking the box marked, “Juvenile Diabetes Research Fund.”

(Technically, JDRF stands for Juvenile Diabetes Research Foundation, not fund, as listed, but hey, when this amazing opportunity is presented, and we score $2 a pop per vote, I’m certainly not going to quibble!)

The closing date for this offer is 15 October-if you can get ten of your friends to vote, you’ve just contributed $20 (thanks Squidoo!!)to the JDRF!

Cory has things covered in America, putting in every effort to make people aware of this fantastic fundraising opportunity. It would be a real honour, on behalf of Lance, and everyone affiliated with  Australia’s JDRF, if you could take a few seconds to “donate” $2, AND increase the overall total. 

It’s an extremely rare opportunity to be offered such a simple way to raise funds for one of our favourite charities who do so much for families and children, living with type 1 diabetes.

PLEASE VOTE!!!

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We, The Unidentified.

Bravo, JDRF Australia!

THANK YOU for showing us the facts on paper. 🙂  Your team conducted a broad scale survey about what it’s REALLY like to live with Type 1 Diabetes, and you came up with some staggering results. 

Considering that Australia is the most obese nation in the world, and there has been millions of dollars poured into advertising for weight loss,( with the fearful threat intertwined of becoming a “hearty” candidate for type 2 Diabetes), it appears that all of the amazing advocacy work that we thought was leading us to finally establishing an identity of out own has lead us back to sqare one.

JDRF said that from the 2300 respondents (which was aimed at all age groups-adults with type 1 diabetes, parents with a child/children with type 1 diabetes and other people with a personal connection to type 1 diabetes-family, friends, co-workers, sent a very strong message that the current focus on obesity in discussions of diabetes had created a “blame culture”, which in turn causes misery and depair for families living with Type 1 Diabetes, as reported in “Update“-The Official Newsletter of JDRF Australia.

THE FINDINGS.

ADULTS living with Type 1 Diabetes reported a common complication that accompanied their condition-depression and anxiety, with 25% reporting a clinical diagnosis during their time living with diabetes.

Even more concerning were results indicating that this debilitating condition was not being managed as well as possible by health care professionals, with only 7% of respondents declaring that they had been referred for psychological support.

Heartbreakingly, depression or anxiety was ALSO the most commonly reported complication for children with type 1 diabetes, with a staggering 1 in 10 declaring this dreaded complication.

(Reassuringly, all of the candidates had been referred to a psychologist or other specialty care.)

THE HEALTH SYSTEM.

Agasp… MORE than 50% of adults and 40% of parents reported that they had experienced a Health Care Professional demonstrating a blatant lack of knowledge about type 1 diabetes.

(I shuddered as I read this statement in particular, recalling a registrar in hospital, neglecting to read the nurses’ notes, and almost overdosing Lance with a double dose of Novorapid. 30 minutes later, I discharged Lance from the hospital, fully aware of the risk I was taking-however, as his fulltime carer, I felt he was at more risk in that ward than he was in his own cosy nest at home. Hate to say, ‘I TOLD YOU SO”, but in this instance, I was right. Also, how could I POSSIBLY forget the after hours doctor who told me to “break Lance’s “tablets” into halves, and only give him a half dose while he was unwell, despite having “TYPE 1 DIABETIC” emblazoned in red on his file!!!!!! Not to mention, I alerted the doctor,by stating;”I AM PRESENTING MY SON WITH IDDM TO YOU FOR A SECOND OPINION REGARDING HIS INSULIN DOSES….!!!!!!”)

30% of adults also reported that diabetes was not the first diagnosis when they became ill.

Almost 20% of adults did not consider their diabetes to be well managed, however, around half of repondents reported no complications, and no emergency room visits since diagnosis.

FAMILY, FRIENDS AND PUBLIC.

Almost 30% reported feeling extremely worried about having a hypo at work or school.

The good news was that just over half of the respondents felt confident that their fellow workers or school friends could assist in an emergency.

THE DEVASTATION.

Nearly HALF of all parents reported being made to feel that their child’s type 1 diabetes was their fault, due to the constant confusion between type 1 and type 2 diabetes. EVERY PARENT  HAD AN ENCOUNTER RELATING TO AN INSENSITIVE, IGNORANT OR DELIBERATELY CRUEL REMARK ABOUT DIABETES, causing heartbreak to them or their child.

Source:

JDRF Update newsletter, Winter edition, 2008.

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