{"id":12510,"date":"2012-06-20T05:31:07","date_gmt":"2012-06-20T09:31:07","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=12510"},"modified":"2012-06-22T09:19:08","modified_gmt":"2012-06-22T13:19:08","slug":"an-empowered-patient-faces-serious-chronic-disease-how-a-strategy-of-remaining-%e2%80%9clevel-headed%e2%80%9d-worked-for-one-woman","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/06\/an-empowered-patient-faces-serious-chronic-disease-how-a-strategy-of-remaining-%e2%80%9clevel-headed%e2%80%9d-worked-for-one-woman.html","title":{"rendered":"An Empowered Patient Faces Serious Chronic Disease: How a Strategy of Remaining \u201cLevel-Headed\u201d Worked for One Woman"},"content":{"rendered":"

\"\"<\/a>Do you have the ideal healthcare network of individuals supporting your physical, mental, emotional, and spiritual aspects? Sally Richards does. She works with hospitals, neurofibromatosis (NF) organizations, government entities and patients in what she calls \u201ca dynamic healthcare team.\u201d Sally was diagnosed in 1985 with neurofibromatosis2 (NF2) a chronic disease with complex<\/em>
\n considerations. The disease partially paralyzed the left side of her face and deafened her left ear after her first brain surgery in 1986 at 16-years-old.<\/em><\/p>\n

As defined in Medline Plus, \u201cNeurofibromatosis 2 (NF2) is a genetic disorder in which tumors form on the nerves of the brain and spine (the central nervous system).\u201d In a question-and-answer format, Sally, a recent Society for Participatory Medicine member, talks about her successful patient experiences at Chicago\u2019s Northwestern Memorial Hospital and elsewhere.<\/em><\/p>\n

(SPM) How do you manage the diverse clinicians at Northwestern with the complexities of NF2?<\/strong><\/p>\n

(S) I have brain and spinal tumors, so the medical professionals I work with include neurosurgeons, radiosurgeons, neuro-ophthalmologists, internist, spinal specialists and physical therapists.<\/p>\n

Yes, they are there to \u201cserve\u201d me, but I’ve found working with them in a team approach empowers me with all my NF2 complex considerations. My Northwestern clinicians and I have a mutual respect for one another and we have extensive online communications. They typically return my messages the same day or a few days later. In late 2009 as a patient I adopted a stronger \u201cbusiness\u201d focus towards my healthcare \u2013 less emotion and concentrating on remaining level-headed and decisive with my care team while paving the way to ideal participatory medicine.<\/p>\n

(SPM) How do you feel participatory medicine has affected your healthcare?<\/strong><\/p>\n

(S) It’s allowed me to make more informed decisions. My clinicians listen to me, listen to my ideas and concerns, and treat me as a valuable member of my healthcare team. I’ve achieved and honed a confidence level from our interactions. To have a better idea how we work together Northwestern wrote a patient profile article about me<\/a>.<\/p>\n

(SPM) How many NF2 surgeries have you had?<\/strong><\/p>\n

(S) I’ve had five brain surgeries, in 1986, 1988, 1994, 2004\u00a0and 2009; one series of radiation called Fractionated Stereotactic Radiosurgery for my right acoustic neuroma (tumor on the right side near the brain stem);\u00a0and two facial surgeries to improve my facial paralysis.<\/p>\n

(SPM) What are your symptoms?<\/strong><\/p>\n

(S)<\/p>\n