#nf awareness

[aceoffangirls]

NF AWARENESS DAY

Today Neurofibromatosis (NF) Awareness Day.

NF is a group of complex genetic conditions that cause tumours to form on the nerves throughout the body.

NF includes Neurofibromatosis type 1 (NF1), Neurofibromatosis Type 2 and Schwannomatosis.

[kiwismoon]

also some people were asking but since its a large amount of asks I'll answer it here: I'm okay and open to talking about my disease because I want to spread awareness for it. Its not very well-known so any questions you have I'm happy to answer. I'm happy to direct you to official websites for info and stuff because I want the world to be better for all the other people I've met in awareness walks and fundraisers. I want kids to feel heard and not alone, so I want to spread awareness. NF awareness month is May <3

when i was born I was one of 3 with the medical severity and deadliness. the other people died at 17 and 18. my whole life I grew up seeing dozens of doctors at cancer centers, the mayo clinic, etc and being apart of studies on my mental and physical health to try and understand NF better. there is not cure, but they recently released a treatment for non-operable life threatening plexifibromas (although its only for adolescents so I do not qualify). thats the biggest break-through im aware of thats happened recently. (aside from them finding frogs with NF? and theyre recently linking anxiety/increased anxiety to adults with nf).

im pretty sought after medically since my form is rare in its manifestation mostly being life threatening/more pain based (for type 1, although I have symptoms from type 2 as well? it confuses me to this day because I received improper care after moving and going to a place with a really bad doctor)

so time for ??? idk website stuff. CTF.org is p good for info so here are some stuffs

awareness:

NF Awareness Month | Children's Tumor Foundation

about nf (specifically type 1)

NF1 | Children's Tumor Foundation

how can you help? just spread awareness please. I've never met anyone who didn't know me/wasn't a specialist in it who knew what it was. if I feel alone I know others do and it really breaks me to know that.

if you have NF, please know you're not alone. I am here. we are here. things will get better. they have to. I will do everything in my power to raise awareness. i promise, I will try to help in any way I can. I want to make the world better. I want to give us a voice and a platform. I want the world to hear us and listen.

I want to help for the future generations.

I've never wanted my whole life to be based on my disease because i hate the sympathetic looks. but I will do anything I can to raise awareness. I have some projects im thinking of doing along with documenting my journey from here on out. I will try my best. Feel free to ask questions in my inbox or dm me. I'll answer as soon as I can.

[viintageswift]

Hey guys,

I’ve been running a fundraiser this month for a cause very close to my heart. May is Neurofibromatosis Awareness month. Neurofibromatosis (NF) is a genetic condition that my little sisters were born with.  It can affect anyone regardless of ethnicity, age, gender or family history. Sufferers develop benign tumours called neurofibromas, which grow around the body's nerve cells - under the surface of the skin, deep in the body, including the spinal cord and brain. Roughly half of all cases of NF arise in families with no history of the condition. There is currently no cure, and treatment options are limited. There are over 10 000 people in Australia living with NF and more than 2.5 million worldwide. Yet most people I talk to seem to know very little about NF.

If you’re not in a position to donate, any reblogs would be much appreciated. More people need to be aware of this condition. Thank-you so much!!!

https://www.facebook.com/donate/651017225468724/?fundraiser_source=external_url

(also, wishful thinking here but @taylorswift​ @taylornation​ )

[morethanthediagnosis]

Today is World NF Awareness Day

http://www.ctf.org/get-involved/nf-awareness-month

[poetryseatbelt]

Dear Kids With NF,

You’re beautiful, your tumors don’t make you less so. In fact, they make you more so. I don’t care where they’re at. You’re still fantastic. If what you fear is driving away lovers with that word, don’t fret. If they run away from your technical illness, they aren’t worth it. Furthermore, I promise you, one day someone won’t run from it and they’ll tell you that they love you even with it. Don’t let this damn sites lack of acknowledgement towards kids like us get you down. I promise that it’s okay even if you’ve got fibromas in obvious places like your neck or arms, you’re still beautiful. So ignore the stupid boys that tell you the spot on your arm is gross. Because he’s wrong. Ignore the girls who tell you it’s ugly. Because she’s wrong too. I know that’s hard and it’s especially hard to love yourself like this, but I love you. No matter how NF has impacted you, or what type you’ve got, I love you and you’re amazing because you’re my fiBROma. Get it? Bro? That’s okay. It’s a bad pun anyways. Even though you’re technically ill, that doesn’t make you any less sick. Another bad pun. Whether the bumps and spots are benign or impairing physically, they can be detrimental to your self esteem and that’s okay. They’re beautiful. Maybe play connect the dots with them, you never know, maybe you’ve got a cool shape. Or a constellation. On my right wrist I have what looks like the Little Dipper. On the same thigh I’ve almost got Orion. If your childhood was like mine, I know the doctors appointments are hell, the needles aren’t fun and the MRIs are certainly not either but my parents say it builds character. That’s kinda bs but just don’t feel sorry for yourself. It won’t get you anywhere. Neither does pretending nothing is wrong. I don’t really know how to write a supportive letter to you guys but I hoped it helped.

-with love, someone like you

[planet-ayurveda]

World Neurofibromatosis Awareness Day - 17th May

[morethanthediagnosis]

[morethanthediagnosis]

Diagnosis Criteria: Neurofibromatosis Type 2 There are two different criteria for Neurofibromatosis Type 2 (NF2), the Manchester Criteria and the Baser Pediatric Criteria. Manchester Criteria (1997 – Now) The NF2 Manchester Criteria is what an individual with NF2 may face but is difficult to use for pediatric diagnosis. Many with NF2 do not meet the Manchester Criteria for diagnosis until late teens. The Manchester Criteria required one of the following three conditions to apply for diagnosis of NF2: • Bilateral Vestibular Schwannoma/Acoustic Neuroma • 1 or more 1st degree relative with NF2 + unilateral Vestibular Schwannoma at <30 years • 2 of the following: Meningioma, Glioma, Schwannoma, Juvenile Posterior Lenticular Opacities Baser Pediatric Criteria (2016-Now) The NF2 Baser Pediatric Criteria not only helps with an early-life pediatric diagnosis but can be used for diagnosis of a spontaneous-mosaic NF2 to determine if their child has hereditary NF2. One of the following - Primary Finding: Bilateral Vestibular Schwannoma Added Features needed for Diagnosis: none - Primary Finding: First-degree relative with NF2 Unilateral Vestibular Schwannoma, or - Added Features needed for Diagnosis: Any two (2) other NF2-Associated lesions: Meningioma, Schwannoma, Glioma, or Cataracts - Primary Finding: Unilateral Vestibular Schwannoma Added Features needed for Diagnosis: Any two (2) other NF2-Associated lesions: Meningioma, Schwannoma, Glioma, Neurofibroma, or Cataract - Primary Finding: Multiple Meningiomas Added Features needed for Diagnosis: Unilateral Vestibular Schwannoma, or Any two (2) other NF2-Associated lesions: Schwannoma, Glioma, Neurofibroma, or Cataracts ___ Café spots are part of the criteria for the diagnosis of Neurofibromatosis Type 1 (NF1), they are not a part of the NF2 criteria since it is possible but not guaranteed. https://www.nf2is.org/diagnosis.php