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Olyan betegeket keresek, akiket szintén Huntington kórral diagnosztizáltak.
Sajnos nem találtam egyetlen alapítványt sem, egyetlen csoportot sem, ahol megtalálhatnám a sorstársaimat.
Üdvözlettel: Rátkai Judit

Kedves Judit! Most alakul meg

Kedves Judit!

Most alakul meg Magyarországon a Magyar Huntigton Társaság. Amennyiben szeretne tagja lenni kérjük jelezze a molneur@gmail.com email címen. Dr. Molnár Mária Judit

Huntington

Kedves Judit!

Ha bármi kérdése van a betegséggel kapcsolatban , kérem az alábbi email címre írjon: judit8889@gmail.com.

Egy sorstársa

SMA (?)

Üdvözletem!

4- 5 éve (34- 35 éves koromban) kezdődött a problémám, ami járási nehézség volt. Orvostól orvosig küldtek, míg nem eljutottam a SOTE Ritka Betegségek Intézetébe. Túl vagyok egy jó pár vizsgálaton, 3 genetikai vizsgálaton, izombiopszián, de még mindig nem biztosak a diagnózisban. Most OEP engedélyre várok külföldi vizsgálathoz. Az orvos SMA-t gyanít. Érdeklődnék, hogy van- e itt olyan, akinek felnőtt korban alakult ki a betegsége.

SMA csoport

Kedves Anonymus,

A Facebook-on vagy egy SMA Egysületi Csoport, jelenleg itt kaphatod meg a legfrissebb információkat.
https://www.facebook.com/groups/smaegyesulet/1395715133803676/?notif_t=l...

Köszönöm a válasz, ritkán

Köszönöm a válasz, ritkán járok erre! Csatlakozom.

SMA (?)

Hello!
Jelenleg 55 éves vagyok. Pár éve a Debreceni Egyetem Neurológiai Klinikáján nekem is SMA-t (SBMA-t) állapítottak meg. (Kb. 38-40 éves koromban kezdődött, hogy egyre nehezebbé vált a lépcsőzés, a felállás székről, wc-ről.)
Ötödik éve járok (hetente) gyógytornászhoz, plusz minden nap tornázom, így az állapotom a stagnálás és a pici javulás környékén mozog. (Azon rokonok, ismerősök szerint, akik ritkán látnak, javult az állapotom.) Az erőm amúgy változó: egyik nap úgy ébredek, hogy nosza, akkor most gyalogoljunk hamar-hamar 5-600 métert, másik nap meg a ház alatt üzemelő kisbolt meglátogatásán (kb. 80 méter) is el kell gondolkodnom.
A torna mellett jártam fél évig akupunktúrás kezelésekre, de ott nem értünk el érezhető hatást. Most egy csikung gyógyítóhoz járok kezelésre, illetve egy indiai ajurvédikus orvosnál is voltam diagnosztizáláson. A génhibát egyelőre nem lehet korrigálni, úgyhogy a fő feladat az izomzatom visszaerősítése lenne és érdekes módon ebben összecseng a kínai és az indiai gyógyítók véleménye: először az anyagcserémet és a kapcsolódó szerveket (lép, máj, stb.) kell helyreállítani, hogy a belső energia áramlások megtisztulhassanak és utána ez hatással lesz az izomsejtekre is. Persze ezek a terápiák egyfajta életmód változással is járnak - a legnehezebb a kényelmes megszokásokon változtatni...
Ja, a legfontosabb: fejben már eldöntöttem, hogy nem fog ki rajtam a történet, nem hagyom magam. :-)

Siciliai-delta-béta thalassaemia

Olaszországi betegség. Magyarországon a családunk anyai ágon az egyetlen diagnosztizált XI-es kromoszóma deléció. 13377 bázispár kitört a XI-es kromoszómáinkból, amely a normális vörösvérsejt képzésért felelős. A véletlen laborvizsgálat az Országos Vérellátó klinikai laboratóriumában történt. Amerikai vizsgálatok is bizonyították. Nagy fáradtsággal és a fokozott vérsejt képzés miatt csontfájással, apró, csecsemőkori vörösvérsejtekkel, melyek kevés ideig élethépesek. Csecsemőkori haemoglobin nagy százalékban jellemzi még a normális helyett.

choanalis atresia

Sorstarsakat keresek. A kislanyom mar 3 eves. Felmerult bennem a csontosodasi zavar. Szakember kellene aki foglalkozna a temaval. Persze orulnek ha nem igy lenne.

Az én kislányom kétoldali

Az én kislányom kétoldali choanal atresia-val született, most 11 hónapos. A Heim Pál kórházba Dr. Katona Gábor műtötte. Kiváló szakember. Hozzá tudtok fordulni.

Az én kislányom kétoldali

Az én kislányom kétoldali chonanal atresiaval született, most 11 hónapos. A Heim Pál kórházba Dr. Katona Gábor műtötte. Kiváló szakember. Hozzá tudtok fordulni.

vermis és agytörzs hypoplasia

vermis és agytörzs hypoplasia tud valaki róla gyerekkori történet érdekel

Kislànyomnak is ez a

Kislànyomnak is ez a diagnózisa eddig, de semmit nem tudunk róla. Egyenlőre csak a tünetek ismertek. A prognózis nem. Mit szeretnél tudni?

Genetikai rend ellenesség Moya-moya

Sziasztok,

Szeretnék érdeklődni, hogy ki lehet az a 9 ember az országban, aki ezzel küzd.
Az orvosom elmondása alapján én vagyok a 10. aki ebben küzd itt az országban, tehát ezek szerint nem túl gyakori a betegségem...
Jelenleg műtétre várok, melyet új hívnak EC-IC bypass, a bal oldalamom van az elzáródás, ezt fogják a fejemben kicserélni egy műérre.

Köszönöm a segítséget,
Moya-moya

FAP

Sziasztok!
Én Familiáris Adenomatosus Polyposis-ban szenvedek(szenvedtem)...(FAP)
Akinek esetleg ilyen betegsége van,és lenne kérdése nyugodtan irhat nekem az e-mail címemre,
és örömmel válaszolok a kérdéseire!

Akromegália

Üdvözlök Mindenkit!

Akromegáliában szenvedő sorstársakat keresek, tapasztalat cserére.

Jó egészséget mindenkinek!

Kedves érdeklődő, Ajánlom

Kedves érdeklődő,
Ajánlom Facebookon a Ritka betegek sorstárs kereső csoportjába való belépést, ott könnyebben találhat rá a sorstársaira.
Remélem tudtam segíteni,
Eszter

Lehetséges az adóbevallás

Lehetséges az adóbevallás után az adóm 1%-át az alapítványnak felajánlani?

Familial TTR amyloidosis

Örökletes TTR amyloidosis a betegségem. Érdekelne ismer-e valaki olyan személyt akinek ugyanez vagy hasonló a betegsége. Érdekelne hogyan lehet megküzdeni vele.

Ajánlom

Kedves érdeklődő,
Ajánlom Facebookon a Ritka betegek sorstárs kereső csoportjába való belépést, ott könnyebben találhat rá a sorstársaira. Ha konkrét kérdése van, írjon a mentoov@rirosz.hu email címre!
Remélem tudtam segíteni,
Eszter

Schwartz-Jampel szindróma

Szép napot kívánok!
Szeretnék érdeklődni, hogy ismeri-e valaki a Schwartz Jampel syndrome-t? Bárki, ,aki tud olyan személyről, aki rendelkezik vele, kérem ismertesse meg velem, mert nekem is az van. Ezer köszönet.

Ajánlom

Kedves Abelech,

Elnézését kérem ezért a kései válaszért.
Ajánlom Facebookon a Ritka betegek sorstárs kereső csoportjába való belépést, ott könnyebben találhat rá a sorstársaira.
Ha esetleg konkrét kérdése lenne a betegségével kapcsolatban, írjon a mentoov@rirosz.hu email címre.
Remélem tudtam segíteni,
Eszter