こりこ 10代の彼女は稀な病気をどのように診断したか。 自分の症状を検索するべき？ 13歳少女は自分で調べて自分自身の命を救った。 #子宮頸がんワクチン #gardasil #hpvvaccine
How a teen diagnosed her own rare illness
Should you google your symptoms? This 13-year-old did, and it helped to save her life
Amelia Ferguson, who has a rare autoimmune autonomic neuropathyDavid Sandison for The Times
Have you had a niggling pain bothering you for a while? Whatever you do, don’t google your symptoms, it can be fatal — metaphorically speaking. That persistent headache isn’t cancer, it’s too much caffeine, and you have a stiff neck because you slept in an odd position, not because you have meningitis. Whatever dire diagnosis your search turns up, it’s probably best ignored.
Unless, of course, you happen to discover that you are suffering from a super-rare condition with which only a handful of people in the country have been diagnosed. This is what happened to Amelia Ferguson. Two years…
とても重要な情報だと思います。
記事の女の子は、HPV（ガーダシル）の後、
Two years ago the 13-year-old started feeling dizzy and experiencing cold hands and feet, stomach pains and shooting pains in her legs. Her parents first put it down to exam stress but within weeks their daughter’s symptoms had escalated to include joint and bone pain, nausea, reflux and constipation. Her weight was plummeting, she was virtually unable to walk and weak as a kitten.
最初の症状は、めまい、手足の冷感、胃痛、脚の激痛が走る。
その後、数週間以内に、みるる悪化し、関節と骨の痛み、吐き気、逆流、便秘、体重減少、歩行不能、脱力。
検査結果は、異状なしが続き、
病院で、慢性疲労症候群と診断されたが、少女は、何か違うと考え、グーグルで検索を続ける。
オーストラリアのシドニー大学の論文に、同様の症状をみつける。HPVワクチンの後に発症していることも同じだった。
オーストラリアの教授に、連絡をとり、ロンドンの医師を紹介してもらう。
診断は、汎自律神経異常症とういもの。発症率は、１０，０００，０００人に１人程度ということ。
IVIgとステロイドで治療中。
（記事の後半は、患者が、インターネットを使って自己診断することの是非について）
日本語の関連ページ
起立性低血圧などを伴う「自己免疫性自律神経調節障害」(AAG)は免疫治療で改善
In the UK, and also in other countries, the pattern seems to be that girls are developing autonomic problems (dysautonomia) after their HPV vaccination - many of them meet the diagnostic criteria for POTS or Complex Regional Pain Syndrome, but many also have the same cluster of autonomic related symptoms but don't meet the diagnostic criteria for POTS. It depends which country you are in for the diagnosis you're given. In the UK it's usual for the girls to be given a diagnosis of Chronic Fatigue Syndrome, told there's no treatment other than pacing, CBT and GET, and left to their sick beds. The 'lucky' girls, like Amelia in the article, are switched on enough, or have someone close who is switched on enough to start Googling and digging and they find their way to a dysautonomia diagnosis, for which there is treatment, but no cure.
Naturally the powers-that-be deny any link with the cases of dysautonomia and the HPV vaccine, but there is an increasing amount of research and case studies to rubbish this view and to make a case for proper studies. Whether it will happen or not is anyone's guess, but the numbers will soon be too hard to ignore. In Denmark, regional centres have been set up specifically to assess girls with serious health issues after HPV vaccination, and at one of the centres, the doctor is on record as quoting 1 in 500 girls vaccinated is suffering serious adverse reactions. A support group in Ireland has also estimated from their membership that approx 1 in 500 vaccinated are suffering serious adverse reactions to the HPV vaccine.
Disturbingly, but similar to ME patients - a lot of these young teenage girls are being diagnosed with mental health conditions such as Anxiety disorder or Conversion disorder. Getting taken seriously is very difficult, as you well know, and more so if you're a teenage girl!!他のコメントBoth pandysautonomia and Guillain-Barré syndrome seem to fall under the heading of "acute autonomic neuropathies."
http://www.medmerits.com/index.php/article/acute_autonomic_neuropathies/P2
It's interesting that the section on pandysautonomia also says:
In approximately 50% of subjects with a viral infection, infectious mononucleosis, rubella, or Herpes simplex infection precedes acute pandysautonomic neuropathy. This, as well as the acute onset and presence of perivascular mononuclear cell infiltrate in the epineurium, suggests that the etiology is likely to be immune-mediated (Suarez et al 1994).
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