💙 TODAY we celebrate Schwannomatosis Awareness Day! 💙 Currently, Schwannomatosis (SWN) Awareness Day falls on May 22nd (along with NF2 Awareness Day) because the location of the gene change that causes SWN is also on chromosome 22. However, we think schwannomatosis deserves its own day of recognition in order to highlight the unique challenges those living with SWN endure. Schwannomatosis is a rare type of neurofibromatosis that causes tumors (called schwannomas) to grow on the coverings of nerves throughout the body. These tumors often cause debilitating pain and neurological dysfunction. The most persistent symptom of SWN is intense pain, which can occur when a schwannoma grows and presses on a nearby nerve or other tissue. This can happen anywhere in the body, and some patients have symptoms in multiple areas. Depending on the location, these tumors can also cause numbness/tingling/weakness in certain parts of the body, headaches, vision changes, and more. Schwannomatosis affects around 1 in 40,000 people. It is diagnosed most often in people over age 30. Surgery may help some people with tumor reduction or symptoms that are directly tied to individual schwannomas. However, the potential risk of nerve damage must be weighed carefully against potential benefits of surgery. While some there are some pain management strategies available to patients, there is currently no cure for SWN. Help us change that. To learn more about SWN or to donate $22 in honor of those living with SWN, visit our website at nfnortheast.org 💙 (fb)

💙 TODAY is World NF2-SWN Awareness Day! 💙 We celebrate World NF2-SWN Awareness Day on May 22nd each year in reference to chromosome 22, which is the location of the gene change for those with neurofibromatosis type 2-related schwannomatosis (referred to as NF2 or NF2-SWN). NF2-related schwannomatosis (NF2-SWN) is a disorder characterized by the growth of noncancerous tumors throughout the nervous system. The most common tumors associated with NF2-SWN are vestibular schwannomas (also called acoustic neuromas—these are benign tumors that develop on the balance and hearing nerves within the inner ear) and meningiomas (benign tumors that develop on the surface/membrane of the brain and spine). However, tumors can also develop in other parts of the brain or spinal cord, with symptoms varying according to their location. NF2-SWN can cause deafness/hearing loss, severe balance problems, facial nerve paralysis, tinnitus (ringing of the ears), spinal cord compression, swallowing difficulties, eye function complications/cataracts, and more. Symptoms differ significantly between patients and no two cases of NF2-SWN are the same. NF2-SWN is a disorder that affects all genders, races, and ethnic groups equally. It is estimated that around 1 in 30,000 people worldwide have NF2-SWN. While some there are some symptom management strategies and tumor reduction medications available to patients, there is currently no cure for NF2-SWN. Help us change that. To learn more about NF2-SWN or to donate $22 in honor of those living with NF2-SWN, visit our website at nfnortheast.org 💙 (fb)