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    Community Voices

    Tough time

    It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

    #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors

    3 people are talking about this
    Community Voices

    Health and a romantic relationship

    Does anyone worry about finding an understanding and accepting life partner? If so, what's your primary concern? I worry about it sometimes. I'm (mostly, lol) confident in what I want and my values but worry someone won't be able to endure years of my chronic illness and mental health struggles (currently seeing a therapist which has been an incredible experience). Grateful for this space to connect. Have a great day everyone!
    #ChronicIllness #ChronicPain #MentalHealth #NF1 #NeurofibromatosisType1 #Neurofibromatosis

    4 people are talking about this
    Community Voices
    Community Voices

    NF awareness day thoughts

    Today is World NF Awareness Day. It's for Neurofibromatosis. I have type 1 and I am reflecting on it today. In some ways it's tough because I am just opening up about it and I don't like thinking I have a disease. I'm working on accepting that term even though I've had NF 1 my whole life. I've had chronic pain from it since August 2013. I hurt everyday. Some days the pain is less others it's off the charts. Today being the awareness day for NF 1, I am in the feels. A mix of many emotions. I'm okay though. I've enjoyed this space so far, thank you all. Have a great day!

    #NF1 #NeurofibromatosisType1 #Neurofibromatosis #ChronicPain

    7 people are talking about this
    Community Voices
    Community Voices

    Any tips on getting a tattoo when you have nerve pain? #NF1 #nervepain

    I got one tattoo before on my ankle and I was able to sit through it. But now it's becoming difficult to find an area of my body where I don't have nerve pain. Even if it's not an area that usually bothers me, it would be extra sensitive to the deep simulation of a tattoo. And I don't want to move and ruin the art.


    Community Voices

    Living with neurofibromatosis type one (NF1)

    <p>Living with <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23cea200553f33fe998c04" data-name="neurofibromatosis" title="neurofibromatosis" target="_blank">neurofibromatosis</a> type one (NF1)</p>
    5 people are talking about this
    Community Voices
    Community Voices

    Tough news to hear #NF1 #midarorticsyndrome

    We thought heading that our little boy had NF1 was hard news to hear, what he was 5 months old. Now he's almost 20 months and they tell us he has mid aortic syndrome. It's hard not to think of many things even though we have little control over any of it.

    1 person is talking about this
    Miriam Gwynne

    Changing the Portrayal of Neurofibromatosis in the Media

    I am part of a community of rare families. Everyone of us has a loved one with the genetic condition neurofibromatosis type 1 (NF). It is a condition that affects only 1 in every 2,500 births — so when any mention of it arises in the media, we want to share like crazy to bring awareness. The problem is the way the condition is portrayed by the media is often incorrect, frightening and very misleading. We feel sharing would actually damage our precious community more than it would support us. What a sad situation to be in. Here are three things I would like the media to remember when talking about neurofibromatosis: Miriam’s son. 1. It is not the “Elephant Man” condition, as often quoted in the media. The “Elephant Man” (Joseph Merrick, an Englishman with severe deformities who died in April 1890) was originally thought for years to have had NF1, but this has been disproven. Now it is believed he had Proteus syndrome. Even if he did have neurofibromatosis, referring to any genetic condition in this way is not beneficial. Although neurofibromatosis does cause facial and body deformities in some people, this is not the case for everyone. NF causes tumors to grow on nerves throughout the body, but for thousands of people affected by NF, they have no outward signs of the condition other than some minor birth makes on their skin (café au lait marks). Would you know that these beautiful children all had neurofibromatosis? I thought not! 2. Neurofibromatosis is not cancer. The very mention of the word “tumor” and the media seems to assume cancer. What can be confusing is some people with neurofibromatosis type 1 do need to have chemotherapy, like little Tayen here who despite having chemotherapy, sadly lost the sight in both of her eyes due to tumors on her optic nerves. Tayen. There is an increased risk of people with NF developing cancer, but the condition itself produces benign tumors, which although painful, disfiguring and debilitating, are not cancerous. Only a small percentage of NF tumors require treatment, and this is only if they will cause damage such as blindness (if on the optic nerve and growing) or paralysis (growing on the spinal cord for example). Some require treatment for cosmetic reasons too of course, but these are mostly carried out by operations rather than chemotherapy. It is painful, disfiguring and upsetting, but it is not cancer. The downside of this is it cannot be cured, making treatment difficult, as the tumors will continue to grow throughout life. 3. People with neurofibromatosis are not ugly! There has been a recent upsurge in the media about severe cases of neurofibromatosis in India where the gentlemen shown have huge facial tumors. The article mentions phrases like “terrified people will stare and make cruel remarks,” and “shunned from school because of his unusual appearance,” and a photograph showing his disfigurement with the words “boy with tumor causes his face to droop.” It has to be stressed this is a very unusual case, but there was little mention of that in the report. How would you feel if your child read a similar article regarding a condition they had? It is terrifying for families of newly diagnosed children to see these articles and rightly or wrongly leaves them with the impression their precious child will grow up to be highly disfigured like the article describes. Neurofibromatosis does not make anyone ugly, undateable, unemployable, or inferior. I cannot stress this enough. When a family faced with a new and upsetting diagnosis reads such articles, what are they thinking? What must a mother’s heart feel like to have her beautiful baby shunned by strangers just because of some misinformation they have come across in the media? My son is not the “Elephant Man,” nor does he have cancer and he is certainly not ugly. He has the genetic condition NF1 which means he has challenges with his vision, his learning and he is part of the one in four people with NF1 who also has autism spectrum disorder. I want to raise more awareness about his rare condition and I know many other families do too. We need information based on facts, so people can learn to better accept us. We need headlines that reflect real life, so we can attain greater awareness. We need photographs and wording chosen carefully, so as not to perpetuate fear. Right now my son cannot read, but I never want him to be scared to hear or read about his condition. I don’t ever want to see another family in tears because of another poorly written article on NF. I don’t want any more teenagers with NF ashamed of their body. I want my son to hear stories of people succeeding, people overcoming against the odds and stories of hope, but these are rarely told. This is why the portrayal of neurofibromatosis in the media needs to change. Follow this journey on Faithmummy