This is from KSL TV Utah

Two years ago, Tiffany Searle was an active, happy, healthy little girl. Today she’s confined to a wheelchair. The 7-year-old with bright eyes and big smile now has a body that hangs like a rag doll, muscles that she can hardly move, and no one knows why — not her parents Scott and Valerie, not even her doctors.

Scott said he was told, “I’m sorry to inform you but your daughter has something so rare that we don’t even know what to test for.”
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A young lady (10yrs old) here in town has been in and out of the hospital so many times that everyone there knows her name.
Her troubles have been diagnosed as “beats us” but it must be……. and let’s try……..

She finally got a doctor who said that one of her primary problems was Chrome’s.
When another doctor said she hadn’t tested positive, the response was a very simple, “here’s why it’s chrome’s, and you needed to run a more advanced battery of tests.”

Just before my sister died(of other causes, at age 34) she was diagnosed with lupus. She had suffered from it since her teens, but the basic tests showed nothing. It took a specialist at UCLA to come up with the proper diagnosis and the reason why it had slipped past the priliminary screening.

The basic problem is there are too many patients, too many diseases, too many possible tests, and too few doctors who know enough about the particular problem at hand.
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In this case, maybe a little publicity will bring someone forward who can help, or maybe even an offer from one of the advanced children’s hospitals.

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I was reading a blog called “Madness Beckons” on the origin of the vampire myth and porphyria’s connection to it.

One of the diseases that has been most misunderstood through the ages is porphyria.
This is paragraph is from Pravda.ru
This is a rare disease – only 1 in 20000 people suffers from it. The body doesn’t produce red corpuscles and thus a person’s blood lacks oxygen and iron and this leads to hemoglobin breakdown under the sunshine. Soon blisters and ulcers pop up; a person starts to have sun energy and can even die. This disease can also cause nose, ears and cartilages deformation. His fingers start to convolve; the skin around mouth gets dry and reveals gums, which turn yellowish because of porphyrine deposition on the teeth. Garlic that stimulates red corpuscles emission in the body of healthy person causes the exacerbation of symptoms among the ill people. This goes hand in hand with harsh pain, so these people also often suffer from mental disability.

The extreme cases would seem to be where the vampire / werewolf superstition originated.

This much better explanation is from the American Porphyria Foundation:
Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of “porphyrins” or “porphyrin precursors.” Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends upon the type of porphyria.

The clinical manifestations of the different types of porphyria are not the same. Forms of treatment also depend on the type of porphyria. Therefore, it is difficult to make general statements that apply to all these disorders.

The symptoms arise mostly from effects on the nervous system or the skin. Effects on the nervous system occur in the acute porphyrias. Proper diagnosis is often delayed because the symptoms are nonspecific. Skin manifestations can include burning, blistering, and scarring of sun-exposed areas.

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This is from an article in Al Jazeera:

The UN’s World Health Organisation estimates that at least 10 per cent of the world’s population has some form of disability. To the advantage of the disabled, Victor Pineda is one of them.

A degenerative muscular disorder does not faze Pineda, 29; however, how the world looks down upon people with disabilities, does.

He visited Qatar recently for the third International Forum on Children with Special Needs, hosted by the Shafallah Centre for Children with Special Needs in the capital, Doha.

In a world where “disability is shrouded in mystery and shame; in what little exposure there is to find a solution, it’s our job to educate the masses on how to make sure that disabilities are approached the right way”, Victor said on the sidelines of the conference.

Read the entire article here.

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Sales of new homes in the US fell more than expected in March to their lowest level since late-1991.
The median price of a home was down 13.3% from March 2007, which is the biggest fall since July 1970.

In other economic news, the Commerce Department said that orders for manufactured items such as fridges and washing machines from US factories fell 0.3% in March.
It means that so-called durable goods orders have fallen for three months in a row, which has not happened since 2001.

Groceries cost more. Up by 15 - 20% where I shop.
Gas prices increase on a daily basis.
We’re bailing out Bears Stern because they made bad investments that they should have known were bad.
The banks were deregulated, and now the multi-billion dollar funds are whining about the results of their own greed.

Anyone who thinks that home buyers who got in on a short term low interest, or nothing down loan, or took a contract with interest only payments, could afford a doubled mortgage payment is either stupid or too greedy for their own good.

Somehow I don’t believe investment bankers and fund managers are stupid.
Not that it matters. They have all those friends in high places to bail them out.

Now who’s going to bail out those of us who are caught in the aftereffects of the rich trying to get richer?

The good news is that the Labor Department announced that the number of newly laid-off workers claiming unemployment benefit fell 33,000 last week to 342,000.
– Only 342,000 jobs lost. This certainly sounds like good news to me.

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This is from Devine Caroline in a blog under parenting titled: Who’s (Not) Paying for Autism Treatment?<-Click for article.

A decade ago, autism, a developmental disorder that can chronically alter a child’s social interactions, communication and learning skills, and behavior, was a rare and poorly understood disorder. The diagnosis came with few treatment options and poor prognosis for improvement. Children who never learned to speak or care for themselves were sometimes institutionalized.

Even though most clinicians and researchers agree that early, intensive therapy—such as teaching behavioral skills and positive reinforcement—make a big difference in an autistic person’s overall outcome, most private insurance companies don’t cover it. In fact, autism is usually an excluded diagnosis, even though treatments are often covered under other diagnoses.

A well written, informative article without any drama.
At the end of the blog are several important links.

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From BITS NYT:  Ad Industry Bans Targeting People With Cancer; Ads to Widows and Orphans Allowed

A group of advertising companies is proposing restrictions on monitoring users’ Web surfing on some sensitive topics. Cancer and sexual orientation are on the list. It said targeting ads based on “political affiliation” or “death” is sometimes acceptable.

The essence of the proposal is to identify sensitive subjects that advertising companies should not keep track of. Here is the list:
1) Certain medical/health conditions–
* HIV/ AIDS status
* Sexually-related conditions (e.g., sexually transmitted diseases, erectile
* dysfunction)
* Psychiatric conditions
* Cancer status
* Abortion-related

2) Certain personal life information–
* Sexual behavior/orientation/identity (i.e., Lesbian/Gay/Bisexual/Transgender)
* Criminal victim status (e.g., rape victim status)

The following subjects are a matter left up to the individual advertiser.
Age, addictions (e.g., drugs, alcohol, gambling), nationality, criminal history, death, disability, ethnic affiliation, marital status, philosophical beliefs, political affiliation or opinions, pregnancy, race identification, religious affiliation (or lack thereof), trade union membership

The whole point of this is to try and preempt an attempt by the Federal Trade Commission to impose their own guidelines.

Mr. Hughes of the Network Advertising Initiative wrote back to explain the “death” category:
” We were thinking about people who were making funeral arrangements or otherwise attending to issues related to the death of a loved one.”

The major problem as I see it is the amount of leeway given to people I consider to be spammers, and the fact that companies like Tribal Fusion are not members and so will not be bound by the proposed regulations.

“Hi: I’m the fox. Let me design the security for your new hen house.”

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My fairly casual reading on Autism has led me to some interesting places. Most of which have nothing to do with the original affliction.

Today on a blog titled My Cancer hosted by NPR I came across the writings of someone dealing with the disease and reporting on it from their perspective on a regular basis.
The title I chose comes from their blog of April 10, 2008.

An Inconvenient World

“The world is not made for people who are in discomfort or pain. It’s certainly not made for the disabled. ”

We have all known victims of devastating diseases. Most of them start out with the usual fit of denial. Then they get into a poor me frame of mind and some of them never get over it.

The author of My Cancer seems to be dealing with it as calmly and rationally as anyone in that position could ever be expected to.

His comments on little things like the mat at Johns Hopkins, the hospital bathrooms not being accessible, automatic door problems and low chairs, remind me of all the time I’ve spent in hospitals.

My time in hospital has rarely been because there was anything wrong with me, but instead has been sitting with friends and relatives. This makes my perspective different.
If anything, ill designed bathrooms, malfunctioning doors, low chairs and a host of overworked and sometimes incompetent staff makes me angrier than it does the people I am visiting.

As patients they all seem to have developed a certain sense of resignation. While I tend to be of the opinion that hospitals are supposed to take care of people not just warehouse them.
(I also expect Dr Kildare, not Frank Burns, speaking some unintelligible language they purport to be English.)

Reading this blog reminds me that there is always someone coping with an inconvenient world.
It also humanizes a subject that is rarely addressed except in the abstract.

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I just received a comment about the Autism lawsuit from Liz Ditz of the blog, I Speak of Dreams.
Until a few minutes ago this was one of the many sites I had never heard of.

Her tagline describes her site well.
Passions: Effective parenting and education, learning disabilities, non-profit management, horses, and fun!

Her posts tend to be very short(with links to the pertinent sites) but they demonstrate a passion for her subject matter and a good sense of humor.

While I haven’t yet made up my mind about her blog as a whole, I highly recommend her blog on the lawsuit. —In it she includes links to numerous sites that have covered the subject to one degree or another, as well as a link to the subpoena.

After you’ve had all the depressing lawsuit information you can stand. Return to her site and follows the links to SIWOTI Syndrome or Equestrian Humor.

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This is something I believe needs to be read and researched:

Kathleen Seidel wrote a blog on neurodiversity.com about a lawsuit brought forth by Rev. Lisa Sykes and Seth Sykes claiming that vaccines caused their child’s autism.

From Ars Technica:
Despite the fact that all evidence points against the existence of a link, some parents of autistic children have pursued both “cures” for mercury poisoning and lawsuits against vaccine manufacturers.

Now they are going after Ms Seidel. It appears to be primarily because of this paragraph:

“And thus the Sykes’ legal odyssey continues ad infinitum — a hydra-headed quest for revenge, for compensation, and for judicial validation of autism causation theories roundly rejected by the greater scientific community, by numerous courts, and by a great number of individuals and families whose interests they purport to represent.”

This is from Ars Technica:
In late March, Siedel received a subpoena that seeks her appearance as part of the lawsuit. Should the subpoena stand, Siedel would also have to produce documents regarding the financial operations of Neurodiversity and any contacts with the government or pharmaceutical industry, other members of the autism blogging community, or scientific journals. Bizarrely, Siedel would also have to produce any “communication with any religious groups (Muslim or otherwise)”—this may be related to the fact that one half of the couple is an ordained minister in the United Methodist Church.

It appears to me to be a case of parents looking for someone or something to blame and lashing out at whoever disagrees.

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I read this on CNN.com/us.

“How was your day?” Soma asks.

Before Tito can answer, he obsessively moves around the house, placing the TV remote in its proper place, arranging the salt and pepper shakers just so. Then he sits down in front of his specially designed keyboard to type his response.

“It was like a floating kangaroo that kept itself invisible,” Tito answers.

Tito is Autistic, a poet, an author and his mother’s first pupil.
In his writings, he explains why he doesn’t make eye contact, what it is like to be obsessed with a ceiling fan, and how his brain has trouble processing sound, touch and sight all at once.

His mother refused to accept his condition and finally adopted a method of teaching that is called the Rapid Prompting Method.

She was so successful that she now teaches at the HALO — Helping Autism through Learning and Outreach — center in Austin, Texas.

I have known families with autistic children, but I had never heard of this method before. The children I have known were medicated, given minimal therapy or mostly ignored.

Whether Tito is particularly gifted or this method can work with all but the most severely autistic children I don’t know, but it does give a glimmer of hope.

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