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Anyone diagnosed with “atypical connective tissue disorder"?”
Autoimmune Diseases | Last Active: Jan 31, 2022 | Replies (11)Comment receiving replies
Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
- Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html
If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.
How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?
Replies to "Hi @basslakebabe19, I also added this discussion to the Breast Cancer group. From your earlier messages..."
In 1985 I got breast implants, silicone. I was never sick a day in my life before this. A year after I got the implants, all of the hair on my body fell out and my kids had to take care of me. I was diagnosed with 40 diseases that were silicone related. One of them was connective tissue disease. At the time I had no idea what it was. Now at almost 64 I am fully aware of what this disease is and how it makes you feel. Those breast implant ruined my life and I have so much pain right now and no way to get rid of it because surgery doesn't help. It's too much.
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The diagnosis came in the late ‘90’ s when I was filing for the Dow Corning settlement. While it took over ten years to settle, I fit “their” criteria for atypical connective tissue disorder. Believe me, it was quite an extensive process. I had to meet so many medically substantiated diagnoses that I was kept quite busy. Many symptoms, but that was decades ago. Mainly the silicone spill affected my tendons, especially in my shoulders. I lost both rotator cuff muscles, leaving nothing left to hook them up to. The tendons just dissolved. That lead to reverse shoulder replacement surgeries decades later. (Thank you, Dr. Sperling) I also lost the tendons in my right arch. The surgeon removed toe tendons to make new ones for the foot. There were numerous other conditions which are too lengthy to explain. My diagnosis came from the main expert in silicone disease in the ‘90’s ( who performed the explanation in the ‘90’s) and knew exactly what blood tests and MRI’ S to have. I had all the supporting info for the Dow Corning Settlement . Believe me, that was tough; they created an entire booklet with requirements to meet and document. I was my own attorney as no one wanted the case back then. It’s been a long journey. The silicone cannot be completely eradicated. I just try to lead as healthy a life as I can and address issues as they pop up....such as a recent biopsy which revealed a pre- cancerous lesion.
I just read the article from the link you posted, and yes, I was also diagnosed with Sjogren syndrome, fibromyalgia, and many others which I can no longer even remember. I just burned all the records yesterday as I have put this dark period behind me. I am a survivor; that is all I need to know.