Tuesday, August 2, 2011

LPHS Awareness Day Freebie Kit

My daughter suffers from Loin Pain Hematuria Syndrome, an extremely  rare kidney disorder that causes excruciating pain and blood in the urine. It is often complicated by other disorders and diseases. Because it is so rare (fewer than 100 people in the world are known to have it), people (even doctors) don't spend much time on learning more about it. So this today I'm offering you a free kit, to raise awareness about LPHS.

If you don't want to read the article, just scroll down and pick up your free kit.

What is Loin Pain Hematuria Syndrome?
Loin pain-hematuria syndrome (also known as LPHS) is a combination of loin (ie kidney) pain and hematuria, which is a medical term for blood in the urine.
The loin pain can be described by many different terms like dull or sharp, constant or in waves. 
The blood in the urine may be visible to the naked eye, coming in occasional attacks. There may even occasionally be blood clots.

We know the pain is there and that the blood is in the urine but we do not know why.  As LPHS is a rare disorder, not much is known about the underlying causes
What are the symptoms for loin pain hematuria?
  • Severe loin pain
  • Blood in the urine
  • Low-grade fever
  • Loin tenderness
  • Excess protein in urine
Who can get it?
It is more common in women (70% of all cases), and has been seen mostly in the United States, Great Britain, Australia, and Canada, suggesting a white predominance. While it can start at almost any age, most patients will first develop symptoms in their 20’s.

Where is the pain felt?
Pain is usually felt in the loin or flank, it can occur on one side or both sides and may radiate to the abdomen, groin, inner thigh and around the sides of the body to the back, it can vary from person to person.

What tests are needed?
It is a diagnosis of elimination.  Blood tests are done to ensure that the kidneys function normally. Urine is examined to exclude infection. X-rays or scans are usually done to look for stones or other abnormalities. Some people may require a kidney biopsy or renal angiogram if there are pointers to suggest possible inflammation in the kidneys or problems with the blood vessels to the kidney.

How bad can the pain be?
Some people can be incapacitated by the pain, requiring time off work, strong painkillers and even hospital admissions. Most seem to experience the uncontrollable episodes which result in a hospital admission these episodes can happen daily, weekly, monthly or yearly. If given the correct pain relief and correct dose a normal life can be lead and functioned, however if your dose is not high enough to treat your pain level you are most likely to become incapacitated.

What treatment is there?
There is no cure for loin pain hematuria syndrome has there hasn’t been enough research to find the cause of the condition.

What can be done for LPHS?
What is known is that patients with LPHS tend to have normal kidney function, which does not deteriorate over time. Thus, treatment is aimed at pain control and improvement in quality of life. Multiple therapies have been tried, all with mixed results. These include:
  • Medications such at angiotensin-converting enzyme inhibitors (a family of blood pressure medicines which reduce the pressure in the kidney and have been shown to be of benefit to some patients), non-steroidal anti-inflammatory drugs (such as ibuprofen, naproxen, or ketorolac), and narcotic pain medications and
  • Nerve block procedures to decrease the pain signal from the effected kidney
Treatment is mostly a “multidisciplinary” approach involving primary care doctors, nephrologists, psychiatrists, and chronic pain specialists.
Surgery like denervation, sometimes gives rise to a short period without pain, but it always returns. If the pain is one sided, operations to remove the kidney from that side usually result in pain starting on the other side. Removal of one or both kidneys for a condition that does the kidney no harm in the long run is not recommended.

A very small percentage of patients can eventually grow out of it; most patients have only seen it  gradually get worse with time.

For more information on loin pain hematuria syndrome visithttp://livingwithlphscouk.fatcow.com/?page_id=12 a site created by a patient to bring together all basic information and stories of patients.

                                                  DOWNLOAD PART 1                                                 DOWNLOAD PART 2


  1. Wow! I'd never heard of this, though I guess it's not surprising since it's so rare. Thank you for teaching me about it. Who knew? I will pray for your daughter - this sounds like a terrible thing to live with.

    Good luck to you and her :-)

    Oh, and thank you for the freebies...I'm off to grab them now :-)

    (Ok, for some reason I can't login to google so that I show up here - ugh! Sorry about that...I don't mean to be anonymous.)

  2. I don't think I even read about this in med-school (or I've since forgotten!)...thanks for the input. Hope you and your daughter are coping well enough with this rare illness. Thank you for sharing your time and talent too. God bless you always. :)

  3. Thanks Suzi for bringing more awareness to this condition. Hopefully bc of people like you we'll find a treatment in my lifetime ...although I forget what life without pain is. My love to you and your daughter. Thanks again for bringing more attention to LPHS. Xoxo Melanie Botscheller

  4. Praying for your daughter. By spreading the word you are bringing much needed attention to this condition. Thank you also for spending your valuable time and talent and providing such a lovely kit. Nancy

  5. Hello and Thank you for this download. It isn't fair how some people have to suffer so much. I hope your daughter is one of the ones who eventually grows out of this condition...