Colloborative Data Sharing

Colloborative sharing of Medical Conditions & Symptoms

About Us

Over the years our family has had numerous situations involving physical and medical challenges. I've spent hours and hours researching data on the internet and found ways to help my family members by looking at data that others shared in blogs and informational websites.

PCOS - Polycystic Ovarian Syndrome

Our daughter was diagnosed with PCOS as a teenager. She'd never had consistent menstruation and we visited a gynecologist when she was about 15 years old who mentioned PCOS as a possibility. In this case our doctor did identify the issue but the internet has helped my daughter learn more about it and cope better. She has all of the classic symptoms; cysts on her ovaries, weight gain, acne, hair in places that she rather not, and severe mood swings. She's now 21 years old and has been trying alternative methods of helping herself including diet modifications. These modifications seem to help her more than the different medicines that she's tried. She's very interested in what has worked for other people and what other people have tried. We are starting our website with a survey on PCOS to try to gather information from people to determine whether as a community the information by people around the world can help find some way to help people help themselves.

PFAPA story

When our son was between the ages of 3 and 5 he was having frequent fevers. He wouldn't move his head while he had the fever, and understood the word head ache at a very early age. After frequenting various doctors and never given a reason for these fevers, I started researching online. I tracked his fevers and noted that they were happening periodically at around the same distance apart. Online I found a condition called PFAPA which stands for, Periodic fever, aphthous stomatitis, pharyngitis and adenitis.

Wow, our doctor never mentioned that! After reading information in the various blogs from other moms whose children were experiencing the same thing, we had his blood lab tested, and it was consistent with the condition. After hours and hours of reading blog data I saw a trend in that many children experiencing PFAPA would improve after their tonsils were removed. I went to an ENT, described the situation and asked that they take out our sons tonsils. They did and he hasn't had a fever since. He's now 19 years old.

Spinal Infection - Osteomyelitis story

My husband had spine surgery to remove a cyst and a laminectomy in 2010, as the cyst was pressing on his nerves causing severe nerve pain. Several weeks after having the surgery, he started having increased pain which escalated over the next few weeks and became excruciating and incapacitating. He collapsed while I was on a business trip in Ireland and I had to fly home to help him. We went to the neurosurgeon who performed the surgery and he said he thought it was just spasms and sent us to a chiropractor friend. It was so painful for my husband that he could barely walk into the chiropractor's office. The chiropractor was unable to do anything and we ended up in the ER a day or so later. They treated us like Oxycodone addicts, it wasn't a pleasant experience, and sent us home. By the time we went to the ER, I was convinced that he had a spinal infection. I had spent hours and hours researching data online, looking at case studies and reading symptoms from different people in different blogs and websites. The hospital indicated that they couldn't do an MRI, shot him with Morphine and sent us home. I ended up writing up my husbands symptoms and a timeline of what was going on and camped out at the neural surgeons office. At the bottom of the timeline, I had written "possible osteomyelitis". When the doctor finally read it he ordered an MRI. When they did the MRI they could see fluid. He was expecting a spinal fluid leak. I asked if it could be puss and he was skeptical. When they finally performed surgery it was discovered that it was in fact an infection and the disc between his L4 and L5 was completely eaten away. I won't go into the rest of the details but there was a lot of hospital time involved and another surgery after this. Again, the internet helped me draw conclusions about what might be happening.

Other Scenarios

I am certain that other families have run into similar situations and have found the more data that they have the better they are able to help themselves or help family members or friends. I'm very interested in alternative methods of helping ourselves and think there is sometimes too much time spent masking the symptoms rather than getting to the root cause of the issue or disease.

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