Below are some case studies from our International H.E.A.R.D. Registry:

Nancy was also diagnosed 11 years ago, at 43, with a tumour in her thigh. The following year, tumours were detected in both lungs. Nancy tried several treaments, with varying success, then a tumour was found in her liver. For the last three years there has been no new growths, and she is not on any medication. She is a busy wife and mother, works full time,  and is kept busy with family, social and church activities, as well as water aerobics and leisurely walks.

Linda, 62, was diagnosed with EHE in aorta and lungs 3 years ago. Linda opted for a relatively new form of radiation therapy called pinpoint precision fractionated stereotactic radiosurgery, and her tumours have been stable since. When not working, Linda and her husband spend many hours taking long walks in the countryside where they live, feeding the swans, the cygnets, and the occasional heron.

Further information about these members, and many others, is available in the H.E.A.R.D. registry. Also listed in the name of treating doctors, hospitals, medications, results, etc, and email addresses to contact each member and share information. Out of respect for members, all information is confidential and is not available on the net, only through private email correspondence, given out to members only.  There is no charge to be a member, just a desire to find out more about hemangioendotheliomas and help each other.