Suffering from rare disease,Familial partial lipodystrophy, dunnigan type, possible mandibuloacral dysplasia

The story of Ruth

I am a 62 year old female, and my Dr. has diagnosed me with Lipodystrophy as stated above. I have Total Healthcare insurance administered under the Obama plan. Since this is a rare disease, My insurance will not pay for the final determining test, nor the treatment. I have undergone many blood tests, ultrasounds, MRI’s, brain scans, circulation tests, and more. I am now at a standstill, and symptoms are getting worse. Apparently I have inherited a mutated gene from birth and it has lain dormant in my body until the past 3 years or so. I have many negative symptoms, so will start at the top and work down. I have developed bags and wrinkles on my face, none of which were present before. My cheeks have sunken in, and lips and cheeks are somewhat swollen on the inside. I believe my Jaw is shrinking some, as my teeth which used to be straight are pushing together in the front, causing some of them to protrude out, and some to protrude in (overlap). I have a large “elephant hump” on my back, just below the neckline. I have developed a large amount of fat on my torso area, including 3 layers of belly fat, down to the pubic area. I have fat under my arms and on my sides to where it jiggles when I walk. I have a build up of fat on my hips, yet my buttocks are totally flat. My arms are very thin, and my legs are extremely thin, almost skin and bone. I have a red rash on my elbows, knees, ankles, and feet. My feet are numb, and I do believe they are shrinking. They have been numb for about 3 years, and I have tested negative for diabetes, hepatitis, thyroid problems, HIV, chrones disease, and a multitude of other problems. I have been in touch with Dr. Garg from your facility in Texas, but so far, nothing is moving forward. I used to have quite a nice body, but now I feel like a freak. Can someone reach out to me and provide some answers? Thank you very much.
Sincerely,
Ruth A. Miller
33522 Unicorn Ct.
Westland, MI 48186
Ph. 734-467-8017
Email: [email protected]