59.4K
MCRecent questions so I thought id go over! 😎 ( I have NF2)
1. How much can you hear?
2. Can you use hearing aids ,CI, or ABI?
3. How do you cope with that
@mckinnongalloway
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8.2K
SOSelten in der Statistik.
Alltäglich im Leben.
#rare #endnf2 #chronischkrank #awareness
NF2
Hörschädigung
Inklusion
@somehowdeaf
5.7K
ANDouble it and give it to the next person. ❌
#NF2 #DarkHumour #BalancingHumourAndTumours #StrongestSoldier
@an_nf2_point_of_view
7.1K
DRBilateral Vestibular Schwannomas: Hallmark of NF2 🧠
This MRI brain shows bilateral vestibular schwannomas, with tumors in both internal acoustic canals:
Left side: 33 × 26 × 31 mm
Right side: 32 × 28 × 30 mm
The lesions extend into the cerebellopontine angles, causing severe brainstem compression.
Key Point: Bilateral vestibular schwannomas are a hallmark of Neurofibromatosis Type 2 (NF2). Patients may also develop schwannomas on other cranial/peripheral nerves, meningiomas, ependymomas, or astrocytomas. NF2 is genetic, often with a parent affected due to NF2 gene mutations.
Early recognition on imaging is crucial for monitoring, surgical planning, and genetic counseling.
#VestibularSchwannoma
#BilateralCPA
#Neurofibromatosis2
#NF2
#BrainMRI
@dr.adeel.neurosurgery
9.9K
CHMy NF2 symptoms started exactly 8 years ago today! Gosh 8 years feels long. That’s 8 years of having MRIs, hearing tests, and traveling to Boston every 3 months. That’s 8 years of panic, fear, and waiting for the next shoe to drop. And that’s 8 years of grieving the life I thought I would get to live. 😣
But that’s also 8 years of seeing God’s grace over and over again. That’s 8 years of transformation and growth. That’s 8 years of more purpose and hope than I ever thought possible. ❤️
And that’s 8 years of living a significantly more adventurous life than I ever expected. 😅 🌎
Not a day goes by that I don’t ask God to heal my broken body. But more importantly - I thank Him for using these last 8 years to show me His faithfulness in ways that’s only possible through suffering. ❤️🩹
This isn’t the life I would’ve chosen, but it’s still so good anyway.
@beingpositioned
#endnf #beingpositioned
@christinamenkemeller
4.7K
CHJake is raising his voice. CTF is driving the science. Together, we can ensure NF2-related schwannomatosis patients have more options, more paths forward, and more time.
Progress in NF2 is accelerating — but funding must keep pace.
👉 Donate today: go.ctf.org/donate or link in bio
#EndNF #NF2 #NF2SWN #EndNF2
@childrenstumor
36.1K
LEThe Tokyo Marathon tested me in ways I don’t think I was mentally ready for….
I strongly believe in living life to the fullest despite the odds NF has stacked against me. This trip though, it made me realize there were still parts of me unconsciously afraid of what the next thing my NF can take, especially with my spinal surgery coming up next month.
I don’t want to regret not taking chances. I don’t want to wake up in the future when my NF has taken more from me, and regretting not seizing the opportunities while I still could. And so I did what I could to work around the inevitable pain I felt from my tumor, and I seized every opportunity to keep going.
#noregrets #nf2 #tokyomarathon #nfwarrior #uglycry
@leanna_runningnf2
8.4K
CLNF2 is a neurologic disorder resulting from a change in the gene of the same name, the NF2 gene. When working properly, the NF2 gene prevents tumors from forming. In people with NF2, this gene is impaired and creates a greater risk of developing certain tumors. These tumors typically include vestibular schwannomas (also called acoustic neuromas), meningiomas and ependymomas, which can affect the brain and spinal cord, and schwannomas, which can affect peripheral nerves.
Neurofibromatosis type 2 symptoms vary, but almost all people with NF2 develop vestibular schwannomas, benign nerve tumors, in both ears, which can cause:
Dizziness
Hearing loss, which may begin as early as the teenage years
Tinnitus (ringing in the ears)
Problems with facial expressions
Issues with balance
Difficulty walking
The eyes can be affected, too. Juvenile cataracts are often the first recognizable symptom of NF2 in childhood, and people with NF2 can also develop other types of eye problems related to the condition.
About 50% to 75% of people with NF2 will also develop benign meningiomas in the brain or along the spine. Ependymomas, which tend to develop inside the spine in about 20% of people with NF2, can sometimes be cancerous. Depending on the location of these tumors, they may result in a variety of symptoms as they grow, such as pain, numbness and weakness.
This kitty is made as a representation of the illness and to also help draw awareness. Not many people understand the pain and discomfort that illnesses like this cause. Please be kind to others.You never know what they're battling. 🩷🥹
#chronicillnesses #reality #artist #illness #battles #warrior #warriors #catlover #clayart #represent #SupportEachOther #aesthetic #awareness #spreadlove #spreadpositivity #spreadawareness #nf2 #neurofibromatosis
@clay.cabinet
61.7K
TRn Larissas Körper wachsen gutartige Tumore, die folgenschwere Spuren hinterlassen 😳 Ihre Diagnose: “Neurofibromatose Typ 2 – NF2”. Das ist eine Tumorerkrankung, die sich vor allem im Bereich der Hör- und Gleichgewichtsnerven befindet. Danke @larissa.kaefer für deinen Mut, diese unglaubliche Geschichte mit uns zu teilen 🙏
#taub #gehörlos #gebärdensprache #trudoku #doku #funk #zdf
@trudoku
1.9K
AB💡 Resiliencia y Propósito: La historia de McKinnon Galloway
No se trata de vivir una vida sin dolor, sino de construir una vida con propósito. 🤟
McKinnon Galloway, una voz influyente en la comunidad de enfermedades raras, compartió recientemente un resumen de su "viaje médico". A través de su experiencia viviendo con NF2 (Neurofibromatosis tipo 2), nos recuerda que detrás de cada sonrisa hay una historia de valentía que incluye:
Más de 50 resonancias magnéticas (MRI).
Innumerables cirugías y tumores.
Pruebas de audición constantes y una lucha diaria por la salud.
Lo más inspirador de su mensaje es la gratitud y la perspectiva. A pesar de los desafíos, McKinnon destaca la fortaleza de la comunidad NF2, calificándolos como las personas más increíbles que podrías conocer. Su historia es un recordatorio de que nuestra situación actual no define nuestro valor ni nuestra capacidad de impactar positivamente al mundo.
🔗 Fuente
Puedes ver el video completo y conocer más sobre su historia aquí: Instagram: @mckinnongalloway
#️⃣
#NF2 #Neurofibromatosis #Resiliencia #SaludMental Inspiración HistoriaDeVida Concientización RareDiseaseWarrior SuperaciónPersonal
@abogadorodrigotoledo
2.1K
GABom dia pessoal
Uma satisfação referente ao aparelho pra voltar a ouvir o implante coclear, infelizmente aqui em Minas Gerais é em nenhum estado do Brasil temos o aparelho pra testar meu nervo auditivo por isso o implante mais complexo que é o de tronco cerebral.
Eu creio no milagre
#unimedbh #sbo #nf2 #schwanomatose #cura #governofederal #romeuzema
@gabrielaaguiarconsultora
8.1K
TITeil 3: Wie sieht die Versorgung bei euch aus, kann euch jedes Krankenhaus dahingehend behandeln? 😊
Unsere Antwort habt ihr ja gehört oder gelesen.
Wie sieht es denn bei eurer Erkrankung aus? 🤗
#schädelhirntrauma #nf2 #somehowdeaf #münster #rollstuhl #schlaganfall #hilfsmittel #handicap #wheelchair #tumor
@timostiehl
✨ Guida alla Scoperta #Nf2
Instagram ospita 121K post sotto #Nf2, creando uno degli ecosistemi visivi più vivaci della piattaforma.
#Nf2 è uno dei trend più coinvolgenti su Instagram in questo momento. Con oltre 121K post in questa categoria, creator come @trudoku, @mckinnongalloway and @leanna_runningnf2 stanno guidando la strada con i loro contenuti virali. Esplora questi video popolari in modo anonimo su Pictame.
Cosa è di tendenza in #Nf2? I video Reels più visti e i contenuti virali sono in evidenza sopra.
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✨ Molti creator verificati sono attivi (33%) - studia il loro stile di contenuto
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Esplorare Nf2#nf2 life expectancy#nf2 awareness and support#nf1 and nf2 treatment updates#NF2 symptoms and diagnosis#nf2 hearing loss causes#nf2 hearing loss treatment#nf2 symptoms and treatment options#nf1 vs nf2 diagnosis and prognosis