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NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 1d

it is a sad fact that NF2 can reduce life expectancy due to complications from central nervous system tumours, including VS, meningiomas, and ependymomas. It is very much dependant upon mutation type and tumour burden. But there is hope for the future with more and more research #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 2d

NF2 is for LIFE,
NF2 is PERMENANT,
NF2 is LIFE CHANGING.
#NF2 #ENDNF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 3d

While its not cancer, its life long & destructive
Effects of benign tumours can be equally as devastating, very often life changing (in NF2) and life threatening (in some cases) and with serious implications of a persons quality of life and mental well being. #NF2
#ENDNF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 3d

A light-hearted one today - with thanks to supporter Lizzie.
Our brains really are wonderful and its amazing what sounds we remember after hearing loss.
So what's the current song in your head?? #NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 4d

Clawed hands are caused by damage to peripheral nerves, particularly the ulnar nerve, that control hand muscles. This nerve damage is a result of tumours in NF2.
Clawing typically occurs due to an imbalance between the muscles that flex (bend) and extend (straighten) the fingers. #schwannomatosis

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NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 6d

People with NF2 often experience vision problems
Juvenile Cataracts
Blurry vision, poor night vision, glare sensitivity, and visible cloudiness in the eye.
Cortical Cataracts (CC)
Orbital Tumours
Retinal Astrocytic Hamartomas
visual processing or eye movement.
and more! #ENDNF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 7d

A common problem in NF2
Not being able to fully close the eye—a condition known as lagophthalmos—can lead to several complications,
* Dryness and irritation
* Watery eyes
* Redness and burning:
*;Blurred vision
* Photophobia
* Corneal ulcers or scarring
* vision loss
#ENDNF2 #schwannomatosis #NF2

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 8d

Swallowing and choking difficulties in NF2 are often linked lower cranial nerves
* Tumours affecting cranial nerves IX , X , and XII
* Brainstem compression
* Anxiety and reflux
* Difficulty swallowing solids (dysphagia)
* Choking episodes
* Increased risk of aspiration #ENDNF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 9d

Indeed! but what you dont see
* Internal Tumors like Vestibular schwannomas, Meningiomas and spinal tumors
* Gradual hearing los
* Unsteadiness
* Early-onset cataracts
* Neuropathies
* Facial paralysis or speech/swallowing difficulties
* isolation, fatigue, anxiety and stress
#schwannomatosis #NF2

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 10d

Missing your name being called when you're Deaf or Hard of Hearing (HoH) can be a deeply frustrating and isolating experience, especially in environments where auditory cues are the norm.
This experience can lead to:
Social Disconnection
Delayed Awareness
Emotional Impact
#NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 11d

Ah and just like slipping into the slippers, autumn is upon us and we have the latest Avastin Diaries to share with you.
Pop the kettle on and have a read of the latest blog.
The pic is a reminder of our summer holiday and was taken in Borneo.
nf2biosolutions.org/2025/09/05/a...
#endNF2

Avastin Diary 24 - Year 3 continues - Accelerating Novel Therapy Research for Neurofibromatosis Type 2

We have now decided to see the spinal guys at our next clinic appointment in January at Addenbrookes who know Oscar and are very aware of NF2

nf2biosolutions.org

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 13d

Dinner Table Syndrome - I am sure we have all experienced this
Being left out of spontaneous conversations.
Losing access to incidental knowledge
Feeling isolated, frustrated, or emotionally drained
Social isolation within families.
Emotional distress from being excluded.
#NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 14d

Here is a few deaf awareness tips for you
Get attention first
Face the person
Avoid covering your mouth.
Don’t shout or exaggerate
Use visual aids
Be patient
Sometimes rephrasing what you say can help
But above all we just want to be included in the conversation.
#ENDNF2 #NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 15d

Feeling isolated with NF2 is incredibly common—and deeply valid.
The physical symptoms—like hearing loss, balance issues, or facial weakness—can be isolating enough. But the emotional toll? That’s often invisible, and even more difficult to navigate.
NF2 doesn’t define you. #NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 16d

Tinnitus is a common symptom experienced by patients with vestibular schwannoma (VS)
The prevalence of tinnitus is estimated to be around 70-80% in patients with VS.
The impact of tinnitus on quality of life is substantial,
Dizziness is a frequent and often early symptom in NF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 17d

Did you know side effects from treatments for NF2 can create a whole range of other problems, some that we are only too aware off but also some that we might not have figured are actually relate to treatments.
If you think your treatment is causing problems speak with your clinic #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 20d

Fatigue in NF2 can be overwhelming, not just feeling tired It can hit suddenly, be all-consuming. The exhaustion can be physical, emotional & deeply frustrating. Needing to withdraw from social situations, struggling with insomnia despite exhaustion feeling emotionally drained. #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 21d

Speech-to-text apps—they’re a transformative technology reshaping how we communicate, work & access information. Empowering people with disabilities. Live transcribe has been a game changer for many NF2ers navigating a hearing world for the deaf and hard of hearing amongst us. #schwannomatosis #NF2

Reposted by NF2 BioSolutions UK & Europe

NF Bot @nfbot.bsky.social · 22d

Salvage Microsurgery After Failed Bevacizumab Treatment for NF2-Related Schwannomatosis Vestibular Schwannoma: A Multicentric Retrospective Study

pubmed.ncbi.nlm.nih.gov

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Reposted by NF2 BioSolutions UK & Europe

NF Bot @nfbot.bsky.social · 22d

Prevalence, natural history and surgical outcome of spinal meningiomas in NF2-related schwannomatosis

pubmed.ncbi.nlm.nih.gov

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NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 22d

Dry eye occurs due to:
Reduced blinking, incomplete eyelid closure, post-surgical effects, medication side effects
Severe complications can occur- ulcers, infections, corneal perforation & blindness.
More info from @facialpalsyuk www.facialpalsy.org.uk/support/pati...
#NF2 #schwannomatiosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 23d

Be in the room where ideas begin!
At @camrare.bsky.social s #RAREsummit25, 3 patient voices will pitch research ideas shaped by their communities & lived-experience priorities in the Rare Disease Research Network Showcase.
Tickets: www.camraredisease.org/raresummit25/

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NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 23d

Living with NF2 can feel incredibly isolating—especially when it seems like no one truly understands what you're going through. That sense of being alone is emotional & physical too. The NF2 support groups are a lifeline & unvaluable for many. #NF2 #NF2Support #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 24d

NF2 is incurable, and symptoms often worsen over time. Chronic pain can significantly impact quality of life, mobility, and mental health.
Tumour pressure on nerves
Spinal cord involvement
Peripheral nerve tumours
Post-surgical pain
#ENDNF2 #schwannomatosis

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 28d

Many people—whether they're deaf, hard of hearing, non-native speakers, or just prefer clarity—rely on subtitles or captions to fully enjoy performances and broadcasts. Accessibility is improving across the board, but could still be better. What is your experience? #NF2 #Schwannomatosis