http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands
Monday, April 6, 2015
Day 6.....5 things every Person living with rare disease underatands
I wanted to share this article with you. Rachel and I were interviewed and this article came out. We weren't paid in any way just wanting to help advocate for cushings. This is 5 things every person living with a rare disease understands.
http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands
http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands
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nice to read the post.
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I am exploring this subject as part of a report I need to do on possible careers I might choose. Thank you for your post it has valuable information on this topic.
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ReplyDeleteMy name is Crystal. I'm 36yrs and for 2 half years been in a night mare. I had all these strange symptoms. First my face began to swell on one side. Then I began to get crazy acne,oily skin. I gained 58 lbs in less then 3 months. I started to get strange skin infections like Staph on my ear lobe. I was hospitalized for two weeks from. My immune system became week and developed high blood pressure. My emotions were crazy and still are. I went to numerous doctors but didn't have insurance and no help from doctors. 5 doctors think it's Cushing's Syndrome and I have a new primary doctor now and have insurance. I seen an Endocrinologist for the first time and a complete work up on hormone, cortisol suppressor test, CT of my head, and upper/lower abdominal ultrasound and MRI of Adrenal glands all normal. I kept reading about Cortisol and thinking they should found my elevated but not. Ok, I have an unknown mass in my Mediastinal area and I am going for Xray this Thursday. I pray something shows up because I just want an answer. I have all symptoms of Cushing's, skinny arms and legs that won't gain weight and rest I stated. I read about certain tumors like Thymoma or Thymic Carcinoma, and certain other cancers of the lungs can cause this as well. It would be considered ATCH independent and Ectopic. I've read as certain tumor cells age that ATCH/Cortisol can be short lived. I have symptoms of Androgen excessive production by acne and extremely oily sticky skin. Has anyone had similar symptoms? I haven't been diagnosed yet but continue to be tested. My primary doctor said she'll have to test my hormones every 6 months. I am not waiting till then. Please if anyone can help me with advice or experience.
Please contact me at cmt1980@att.net
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