高齢者に多い難病とは?
両親が聞いたことのない病気にかかってしまいました。
「難病」という言葉を聞いたことがありますか?
現在、日本では333種類もの「指定難病」というものが存在しています。
難病という文字からして治りにくい病気の事では?と感じると思いますが、昔でいう「不治の病」と言われてきた病気の事です。
中には「特定疾患」と呼ばれるものや、高齢になるにつれて発症する病気もあるため、今回は両親や高齢者と関わる上で知っておくべき「難病」について説明します。
目次
難病とは?
「難病」とは、病気の原因が不明で、治療方法も確立しておらず慢性の経過をたどり、長期の療養を必要とする病気の総称です。しかし完治はしないものの、適切な治療や薬の服用を続ければ、時に軽快する事もあり、自己管理をきっちりと行えば普通に生活ができる状態の疾患も多くなってきています。また、調査研究や患者支援も推進されています。
希少な疾病であり、人口の概ね1/1000(0.1%)に相当する数と厚生労働省に規定されており、難病の中でも以下の要件を満たしたものを「指定難病」といい、医療費助成を受ける事ができます。
指定難病の要件
・患者数が本邦において一定の人数に達しないこと
・客観的な診断基準(又はそれに準ずるもの)が確立していること
指定難病についての一覧はこちらをご覧ください。
難病情報センター
特定疾患とは?
特定疾病とは、心身の病的加齢現象との医学的関係があると考えられる疾病です。
次のいずれの要件を満たすものについて総合的に勘案し、加齢に伴って生ずる心身の変化に起因し要介護状態の原因である心身の障害を生じさせると認められる疾病である。
1) 65歳以上の高齢者に多く発生しているが、40歳以上65歳未満の年齢層においても発生が認められる等、罹患率や有病率(類似の指標を含む。)等について加齢との関係が認められる疾病であって、その医学的概念を明確に定義できるもの。
2) 3~6ヶ月以上継続して要介護状態又は要支援状態となる割合が高いと考えられる疾病。
高齢者に多い指定難病とは?
高齢になるにつれて、病気の発症リスクは上がります。
ここでは特に発症しやすいとされる指定難病を紹介します。
・パーキンソン病
振戦(ふるえ)、動作緩慢、筋強剛(筋固縮)、姿勢保持障害(転びやすいこと)を主な運動症状とする病気で、50歳以上で起こる病気です。
大脳の下にある中脳の黒質ドパミン神経細胞が減少して起こります。
ドパミン神経が減ると体が動きにくくなり、ふるえが起こりやすくなります。
ドパミン神経細胞が減少する理由はわかっていません。
・脊髄小脳変性症(せきずいしょうのうへんせいしょう)
歩行時のふらつきや、手の震え、ろれつが回らないなどを症状とする神経の病気です。
動かすことは出来るのに、上手に動かすことが出来ないという症状です。主に小脳という、後頭部の下側にある脳の一部が病気になったときに現れる症状です。
脊髄小脳変性症は一つの病気ではなく、この運動失調症状をきたす変性による病気の総称です。
よって、その病気の原因も様々です。
遺伝性の病気の多くは原因となる遺伝子と、その異常が判明しています。
現在は、その病因遺伝子の働きや、病気になるメカニズムに応じて病気の治療方法が研究されています。
・多発性硬化症(たはつせいこうかしょう)
多発性硬化症は中枢神経系の脱髄疾患の一つです。
私達の神経活動は神経細胞から出る細い電線のような神経の線を伝わる電気活動によってすべて行われています。
家庭の電線がショートしないようにビニールのカバー(絶縁体)によって被われているように、神経の線も髄鞘というもので被われています。
この髄鞘が壊れて中の電線がむき出しになる病気が脱髄疾患(だつずいしっかん)です。
この脱髄が斑状にあちこちにできることを脱髄斑といいます。
病気が再発を繰り返すのが多発性硬化症(MS)です。
はっきりした原因はまだ分かっていませんが、自己免疫説が有力です。
私達の身体は、細菌やウイルスなどの外敵から守られているのですが、その主役が白血球やリンパ球など、これらのリンパ球などが自分の脳や脊髄を攻撃するようになることがあり、それがMSの原因ではないかと考えられています。
・筋萎縮性側索硬化症(きんいしゅくせいそくさくこうかしょう)
筋萎縮性側索硬化症(ALS)とは、手足・のど・舌の筋肉や呼吸に必要な筋肉がだんだんやせて力がなくなっていく病気です。
しかし、筋肉そのものの病気ではなく、筋肉を動かし、かつ運動をつかさどる神経(運動ニューロン)だけが障害をうけます。
その結果、脳から「手足を動かせ」という命令が伝わらなくなることにより、力が弱くなり、筋肉がやせていきます。
その一方で、体の感覚、視力や聴力、内臓機能などはすべて保たれることが普通です。
原因は不明ですが、神経の老化と関連があるといわれています。
さらには興奮性アミノ酸の代謝に異常があるとの学説や活性酸素・フリーラジカル(偏った食事や不健康な生活で過剰に作り出され、細胞を傷つける)の関与があるとの様々な学説がありますが、結論は出ていません。
・類天疱瘡(るいてんぽうそう)
類天疱瘡(後天性表皮水疱症を含む。)は、皮膚の表皮と真皮の境にある基底膜部のタンパクに対する 自己抗体 により、皮膚や粘膜に水疱(水ぶくれ)やびらん、紅斑(赤い皮疹)を生じる自己免疫性水疱症です。
この病気は水疱性類天疱瘡、粘膜類天疱瘡、後天性表皮水疱症に大別されます。
水疱性類天疱瘡は表皮と真皮の境にある基底膜に存在する自己抗体(自分自身を攻撃してしまう抗体)ができることによっておきる病気です。
このような自己抗体が作られる詳しい原因は、まだわかっていません。
粘膜類天疱瘡は主に眼粘膜や口腔粘膜に水疱やびらんが生じますが、のどや鼻、陰部、肛囲の粘膜が侵されることもあります。びらんが上皮化した後に瘢痕(きずあと)を残すことがあります。
後天性表皮水疱症は四肢の外力のかかる部位を中心に水疱やびらんを生じることが多いく、上皮化した後に瘢痕を残したり、爪の脱落が見られることもあります。
家族としての関わり方
難病と診断され、一番苦しむのはやはり診断された本人です。
もしそれが自分の両親だったら、その苦しんでいる様子を見る私達も本当につらいと思います。
しかし、病気はお医者さんに診てもらうとして、家族だからこそできる事もたくさんあります。
・病気に対する正しい知識を持つ事。
・本人の話を聞き、勇気づける事。
・本人の苦しみを聞き、共に「共感」する事。
・支援者は一人で抱え込まず、協力体制を整える。
難病を患う事は決して本人だけの問題ではありません。
したがって、その配偶者や子供、親戚にいたるまで、たくさんの人が関わる事で、病気や生活に対する不安を和らげることができるのではないでしょうか。
一番近くの親族だからといって、一人で関わると、精神的負担も重なってしまいます。
できるだけ家族みんなで支えあい、協力体制を作る事が重要です。
まとめ
冒頭でも話した通り、難病は原因がわからず、完治もしない、療養には時間がかかり、身体的にも精神的にも苦痛を伴う病気です。病気の診断を告げられ、平静でいられる人はおそらくいません。
そして時には軽快し普通の日常生活を送る事ができるようになっても、いつまた症状が現れるかわからない不安を抱えながら、生活していかなければなりません。
つまり、難病とは「治す」よりも「どう付き合っていくか」と思う事が重要です。一生付き合っていくしかないと感じる事が出来た時、初めて病気を受け入れる事ができるのではないでしょうか。
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