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.

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