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FABedtimes are still a headache sometimes. But my body no longer feels like it’s been hit by a bus after, and he feels loved on and relaxed enough to have a good sleep! #nf1 #specialneeds #developmentdelay #five #bedtime
@fayim.hercreative
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KIDo you want to know what my biggest fear about parenting through puberty is?
It’s the fact that those pesky hormones could completely change my daughter’s appearance.
I’m not talking about pimples or the red splotches I knew so well as a kid in the 7th grade. I’m talking about something far more sinister.
My eldest daughter was born with a genetic condition called Neurofibromatosis (Nf1. A genetic condition that can cause tumours to grow on or under the skin.
Janu was diagnosed with NF1 at nine. By 12, visible tumours had formed across her face and body. And while the judgement she faced from classmates was hard, it’s the stares and comments from strangers as an adult that still hurt the most.
My daughter is already 10. She’s creative, confident, and full of spark. But as her mum, I can’t help but worry: What happens if her appearance does change and the world isn’t kind?
@janu_nfwarrior is such an incredible role model for my daughter - and the wider NF community. I just loved hearing her sage advice as a result of her lived experience.
#nf #nf1 #neurofibromatosis #inclusionmatters
@kiindred_official
24.8K
SEWESTLIFE!!! We did it for Christine!!! 🥰🥰
Thank you @shanefilanofficial and @nickybyrneinsta
And of course a special mention to @no1shaygiven and @neenaw10
@xchristinegill @westlife @virginmediaireland @kianegan @markusmoments @donegaldaily @donegalwoman @derryjournal_ @universalmusicireland #braindoctors #westlife #nf1
@sequincinderella
6.9K
LI#neurofibromatose #lipomatreatment #neurofibroma. #neurofibromatose #neurofibromatosis #nf1
@lipoma_treatment
8.8K
EMToday is World Nf Awareness Day where we get to celebrate our NF heroes and raise awareness of this often unknown genetic condition. 💙💚
Every 3 days a child in Australia is born with NF, and my eldest Ishq was one of the children.
But today isn’t just about her.
It’s about the entire NF community who live with varying outcomes, some much more complex than anything we’ve had to deal with so far.
It’s a highly variable, unpredictable and progressive condition that requires lifelong support and the amazing @ctfaustralia are supporting and changing the lives of those living with NF.
Thank you for everything you do. 🫶🏼
#neurofibromatosis #neurofibromatosisawareness #nf1 #nfheroes
@emmy__samtani
272
SMOur sweet and strong daughter was diagnosed with Neurofibromatosis Type 1 (NF1) when she was just a baby. We first noticed the light brown "café-au-lait" spots that covered her skin. What we thought were just birthmarks turned out to be the first visible signs of this lifelong condition.
So what is NF1?
NF1 is a genetic disorder that affects about 1 in every 3,000 people worldwide. It causes tumors to grow on nerves anywhere in the body, including the brain and spine. While many of these tumors are benign, they can still be painful, disfiguring, or interfere with how the body works.
NF1 can also lead to:
• Bone deformities or scoliosis. That’s why she has had 2 scoliosis surgeries.
• Vision problems due to tumors on the optic nerves.
• Learning disabilities, in fact, up to 60% of kids with NF1 need educational support.
• Delayed or early puberty and other hormone issues.
• High blood pressure or risk of cancer in some cases.
For our daughter, this means a team of specialists, neurology, endocrinology, orthopedics, and ophthalmologists working together to monitor her growth and development. Every appointment brings something new, and because NF1 is so unpredictable, we never quite know what the next chapter will hold. That’s both the hardest and most humbling part.
We’ve learned that 50% of NF1 diagnoses are spontaneous, meaning they happen even when there’s no family history. That was the case for us. Our daughter's diagnosis opened our eyes to a condition we had never even heard of before, and now we live with it every day as a family.
There is no cure for NF1, but there is ongoing research, and more importantly, there is hope. Raising awareness is one of the most powerful things we can do as a family.
#nf1 #nf1awareness #family #childrenshealthcareofatlanta #choa
@smurphy0711
25.9K
MA綺麗な肌は今世では永遠に叶わない憧れ🫠
いいなぁ…
#難病と共に生きる #美しく生きる #一歩踏み出す勇気 #本当の自分 #病に負けない #NF1 #ありのまま #挑戦 #堂々と #指定難病 #ENDNF #レックリングハウゼン病 #ガラス作家
@manamiokochi
147.3K
HEFaça uma contribuição direto na minha conta pela chave pix celular 98981670367 | Banco do Brasil
.
Qualquer valor será gratificante
..
Atualizando vocês, ontem fiz minha 4º cirugia. Como vcs sabem preciso de algumas doação pra cobrir gastos de despesas como hospedagem e alimentação.……Compatilhe, comentar e marque várias páginas nesse vídeo
#Nf #neurofibromatose #doencasraras #cirugia #cirugiaplástica #NF1 #doençassemcura
@henrique.paixaoph
5.5K
LIToday is NF awareness day! A genetic condition my son and I are all too aware of. We need more effective treatments & a cure!! @childrenstumor #EndNF #Neurofibromatosis #NF1
#BraveLikeBryson
@linds_marson
8.8K
MO#astrocytome#cancer#tumeurcérébrale#nf1#radiotherapie
🧠🎗️
@mon_astrocytome_et_moi
97.5K
HOThis sweet girl is Sophia and, at just 1-years-old, she is battling a genetic disorder called NF1, which causes tumors to form on the nerves throughout her body. She also has hydrocephalus with tumors now in her brain.
She is in desperate need of an oral chemotherapy, as well as other medications, to stabilize the tumors. Due to the location inside her brain, they are inoperable - meaning a surgeon cannot operate on that portion of her brain.
Recently, insurance has denied approval of her coverage unless she is prescribed a medication that is not a part of her treatment plan.
Sophia has Medicaid, which initially approved the medication, but reversed their decision, agreeing to only cover a portion of overall costs.
To make matters worse, the family's primary insurance refuses to approve coverage at all.
This medication has greatly helped Sophia for seven months and costs $2,000+ monthly if the family pays out of pocket.
Heartbreaking. And so unfair.
Without it, the tumors will continue to grow 💔
We are putting Sophia's #gofundme in our #linkinbio if you wish to help this family in this heart crushing time. Thank you!
#HopeRises #neurofibromatosis #braintumor #donate
@hoperisesnetwork
601.9K
GMAmit Ghose discusses living with Neurofibromatosis Type 1 (NF1).
@gmb
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