Just Diagnosed with Suspected LPHS

I was just diagnosed with LPHS. After 8 months of horrible pain, nausea, kidney infections, kidney stones, and just feeling like I have gotten hit by a bus- I have finally found a diagnosis that fits. I’m 16, so I’m still treated by pediatric doctors. My pain management doctor in Atlanta had abandoned me before I got this diagnosis, and a pain clinic in Boston had turned me away. I had to go in search for something that fit, and I finally found that something: Loin Pain Hematuria Syndrome (LPHS). After exiting my Atlanta adult nephrologist’s office this morning, it was like I was walking on air. I have finally got a diagnosis that fits and he is a man with a plan. Dr. Handelsman was so helpful and I know he could see my relief. He has treated 3 LPHS cases, so he is what could be considered the Atlanta expert. I highly recommend him if you have think you have LPHS and live in the South East.

I finally have something with a one of treatment, and I can’t wait to get started. Anyone else have LPHS? If so, how have they treated it?

3 thoughts on “Just Diagnosed with Suspected LPHS”

  1. I have had LPHS for about 5-6 years now, after not having a diagnosis for a long time I became excited when I could put a name to it. But now that name means nothing, no one knows what it is, no doctors want to help and no one truly understands besides other sufferers. I hope you are able to find a more successful avenue to relieve your pain and suffering than I am. This disease seems to be a curse.

  2. My daughter was diagnosed in the fall of her senior year in high school a year and a half ago. She had no stones, but blood in her urine and extreme pain. A Doppler scan revealed a narrowing of the artery between the two kidneys. (I don’t know the technical term. ) She still has micro blood. We live near Madison, Wisconsin. Her doctor at the University of Madison has had her on a high blood pressure medication. It has helped, but it’s not a long term solution. I’m curious what form of treatment your doctor in Atlanta is using?

  3. School of Health Sport & Bioscience
    University of East London
    Water Lane
    London E15 4LZ
    United Kingdom.

    Hello, Good afternoon. My name is Patrick Fagbuaro and I’m an MSc Medical Physiology student at the University of East London. I have been given permission to contact you and ask a favour.

    For my research project I am conducting an epidemiological survey on patients suffering from Loin Pain Haematuria Syndrome. LPHS is a horribly debilitating disorder and hopefully the work done in this project will contribute to improved understanding and treatment in the future by gathering patient experiences. The questionnaire will be conducted at UEL under the supervision of Amina Dilmohamed, a nurse in health studies with experience in epidemiological surveys; and Professor Michael Seed, Professor of Pharmacology, who was part of a team which recently published a case study on the treatment of LPHS (http://casereports.bmj.com/content/2015/bcr-2014-209165.abstract) and is undertaking fundamental research into LPHS. The study has been given ethical approval (XXXX) by the School of Health Sport & Biosciences Ethical Review Committee. We are currently the only people in the world doing basic research into LPHS.

    If you or the members of your group would be interested in taking part in the survey, or if you can put me in touch with appropriate individuals, the contact details of myself and my supervisors are below.
    Patrick Fagbuaro; u1530213@uel.ac.uk – Prof. Michael Seed; m.p.seed@uel.ac.uk – Dr Amina Dilmohamed; a.dilmohamed@uel.ac.uk
    I would be very grateful for your help.
    Thank you for your time
    Best wishes
    Patrick

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