UW Health’s Post

How NF2 affects me We want you to meet the real life people affected by NF2. We are each affected differently but are linked together by our rare disorder NF2 related Schwannomatosis (NF2). People with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Jo who was 29 years old when her NF2 journey started back in 1999. " I still remember the day as clear as it was yesterday. No-one was sure I was going to make those millennium celebrations! Up until that point, I had a few episodes of losing my balance and my hearing had deteriorated a little by the time I went to the doctors and MRi scans revealed bilateral vestibular schwannomas. Emergency surgery was scheduled for 5 days time when they removed the right sided tumour in a 14 hour brain surgery op which left me deaf on that side with facial palsy. I had severe dry eye problems which resulted in an extra hospital stay. its taken me a long time to get to where i am today" NF2 is a life long genetic condition There is no beginning, middle or ending to any of our stories, no remission or breaks. There are no bells to ring. Treatment options are surgery/radiosurgery/chemotherapy which often results in loss of function of the involved nerve and severe disruption to life. NF2 IS FOR LIFE Reading real life stories about how NF2 affects people helps others to understand why we need better treatments. Please help us to make that happen by donating to research, sharing your story & raising awareness. The Big Give are DOUBLING your donation during the #ChristmasChallenge, please give whatever you can afford to accelerate our research. One donation, Twice the impact!! TOGETHER WE CAN #ENDNF2 We can't do it without you!

As a #MucosalMelanomaSurvivor, I try to give back what I can when I can. In doing so, I can help spread the word about not just #mucosalmelanoma but #raredisease, #rarecancer, #celltherapy, #TILtherapy, #clinicaltrials, and help educate the community in a proactive fashion, rather than reactive in need. Often times people don’t know what they need to know until they have to know it or have no choice. By creating content and being positive, we can help teach each other about the things they need to know before they need to know it. Tomorrow, November 28, will be the 5-year anniversary that I learned that surgery and radiation did not work and I went from stage 3C to stage 4 Metastatic Mucosal Melanoma.. I recall, looking and searching all over the net for anybody like me that had what I had so I could see an example of what they did, and how they did it, but I couldnt find anything. Any, and all information I could find was outdated. I swore to myself that WHEN, not if, but WHEN I made it that I would change that and give back, so at the minimum, the next person will not have to have the same experience that I did. There is no known cause for Mucosal Melanoma and it’s frustrating. Donating money is great If you have the ability to do so, but no matter who you are as long as you can qualify and check the boxes, you can give blood. It just cost a little bit of your time.

It is #GivingTuesday and I hope my connections will consider donating to The Endometriosis Coalition. https://lnkd.in/eDKpkU57 #Endometriosis a disabling disease that has such low awareness of it's true impacts on women and girls. It is not just a bad cycle, its a risk for organ loss and permanent, severe damage to your body without timely, correct intervention. Timely and correct interventions do not happen because the American College of Obstetricians and Gynecologists (ACOG) has not adjusted the standard of care away from dangerous laparoscopic surgical methods that actually speed up the diseases ability to progress in the body. ACOG's resistance to not updating the standard of care puts hundreds of thousands of women on the line all in America. There are 167.5 million women in America. 16,500,000 are diagnosed with Endometriosis and another 16,500,000 likely have it and are not diagnosed. The average time it takes to get diagnosed in America is 10 years. We endure 10 years of suffering and medical gaslighting until we finally find one doctor who believes that our pain is real and will help us. In contrast more than 200 million women in the world live with this disease. There are MAYBE 300 specialists now in the world who are equipped to handle this disease and produce a positive outcome for a patient with endometriosis. and in contrast to what we know about other diseases, we don't know much about the cause or why it happens. Your options for treatment are: A bad lap surgery every 6 months to a year A good lap surgery that lasts 3-10 years Birth Control, with horrendous side effects Advil, which is obviously temporary Lupron, which gives you arthritis at 30 among other side effects That's it! The team at the Endometriosis Coalition is advocating for legislative change, including that endometriosis be added to the list of conditions to qualify for disability. I hope you'll consider donating, or at least sharing this post for a little awareness. #endometriosisawareness #warrior

At our all-volunteer non-profit organization, every dollar you contribute goes directly towards supporting our mission of raising awareness and providing vital resources for those affected by aortic disease. Your support covers a wide range of essential initiatives, including: *Annual Patient Focused Symposium: We organize and host an annual symposium dedicated to patients and their families, providing a platform for education, support, and community-building. *Website Maintenance: Our website serves as a central hub for information, resources, and support networks. Your contributions help cover the costs of website maintenance and updates to ensure we can reach and assist as many individuals as possible. *Patient Outreach: We are committed to reaching out to individuals affected by aortic disease, offering support, guidance, and resources to navigate their journey. *Program Development: Your donations enable us to develop new programs and initiatives aimed at improving the lives of those impacted by aortic disease, from support groups to educational workshops. *Educational Materials: We produce and distribute educational materials to raise awareness about aortic disease, its risk factors, symptoms, and treatment options. *Educational Video Production: We believe in the power of visual storytelling. Your contributions help fund the production of educational videos to spread awareness and provide valuable information to a wider audience. *Marketing Outreach: We work tirelessly to make aortic disease a household word. Your support allows us to invest in marketing outreach efforts to amplify our message, reach more people, and ultimately save lives through early detection and intervention. Every donation, no matter the size, makes a significant difference in our ability to support patients, raise awareness, and drive positive change in the fight against aortic disease. Thank you for joining us in this crucial mission. Together, we can make a real difference in the lives of those affected by this condition.  https://lnkd.in/gfdQH-_E

Organ transplantation shortage!! Dr. Pretorius evaluates the organ donation after circulatory death (DCD) option to expand the organ pool in heart transplantation. Watch the DeBakey Bytes video below to learn more https://lnkd.in/gv_QcMe5 or click the link below for the full-length presentation. https://lnkd.in/gP3mpQvW

How NF2 affects me We want you to meet the real life people affected by NF2. We are each affected differently but are linked together by our rare disorder NF2 related Schwannomatosis (NF2). People with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Hannah, her NF2 journey started aged 14. Hannah has suffered severe, life changing side effects from Avastin infusions. " So far, I’ve had yearly MRIs since I was 14. Countless injections, bloods taken, eye, ear tests, Hormone treatments more needles… and now finally Avastin treatment so I can keep my tumours small so I can keep my hearing for a bit longer. Avastin makes me tired and sick" NF2 is a life long genetic condition There is no beginning, middle or ending to any of our stories, no remission or breaks. Treatment options are surgery/radiosurgery/chemotherapy which often results in loss of function of the involved nerve. NF2 IS FOR LIFE Reading real life stories about how NF2 affects people helps others to understand why we need better treatments. Please help us to make that happen by donating to research, sharing your story & raising awareness. The Big Give campaign is live tomorrow and DOUBLING your donation during the Christmas Challenge, please give whatever you can afford to accelerate our research. One donation, Twice the impact!! TOGETHER WE CAN #ENDNF2

Dr. Pretorius discusses the organ shortage for transplantation. He evaluates the organ donation after circulatory death (DCD) option to expand the organ pool in heart transplantation. Watch the DeBakey Bytes video below to learn more https://lnkd.in/gcGnAkPC or click the link below for the full-length presentation. https://lnkd.in/gqKtj6FT

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Sarah-Jane who has recently been diagnosed with NF2 and underwent her first craniotomy early in 2023 but she has had a tough recovery and looking forward to getting back to work and some normality. NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure, no magic elixir to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Aimee who is 41 and has had numerous surgeries to her brain and spine but still tries to remain positive about life with NF2. NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. It defies the boundaries of time, refusing to be confined to mere moments. There is no cure, no magic elixir to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Meeting the real people affected by NF2 shedding light on the challenges they face. Please help us by donating to our research if you are able https://lnkd.in/ezPZxY2P