“Did you know that our special month for raising awareness about bleeding disorders has been around for almost 40 years? It all started back in 1986 when President Reagan set aside March as National Hemophilia Awareness Month. This happened during a really tough time when many in our hemophilia family were affected by contaminated blood products.

For about 30 years, the focus was mainly on hemophilia. But in 2016, something important changed – the month was officially renamed to “Bleeding Disorders Awareness Month.” This new name recognized that our community includes people with many different conditions – not just hemophilia, but also von Willebrand disease and other bleeding disorders.

According to the U.S. Centers for Disease Control, there are about 3 million people nationwide who are affected by bleeding disorders.

Between 30,000 and 33,000 people in the U.S. are thought to live with hemophilia. The most common bleeding disorder is von Willebrand disease (VWD), which affects about 1 in every 100 people.”

National Bleeding Disorders Foundation, formerly NHF

(Bleeding Disorders Awareness Month | National Bleeding Disorders Foundation)

“Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS occurs equally in males and females and in all cultures worldwide.”

Williams Syndrome Association (What is Williams syndrome? | Williams Syndrome Association)

Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  The most significant medical problem associated with WS is the cardiovascular disease caused by the narrowed arteries. WS is also associated with elevated blood calcium levels in infancy. A random genetic mutation (deletion of a small piece of chromosome 7), rather than inheritance, most often causes the disorder. Williams syndrome is considered an autosomal dominant condition because one copy of the altered chromosome 7 in each cell is sufficient to cause the disorder. In a small percentage of cases, people with Williams syndrome inherit the chromosomal deletion from a parent with the condition.

Most cases of Williams syndrome are not inherited but occur as random events during the formation of reproductive cells (eggs or sperm) in a parent of an affected individual. These cases occur in people with no history of the disorder in their family.

However, individuals who have WS have a 50 percent chance of passing it on if they decide to have children. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 7,500 – 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with Williams syndrome tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems.  Children with WS need costly and ongoing medical care and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. As adults, most people with Williams syndrome will need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees; often working at assisted living homes for senior citizens, hospitals and libraries, or as store greeters or veterinary aides.

However, individuals who have WS have a 50 percent chance of passing it on if they decide to have children. The characteristic facial features of WS include puffiness around the eyes, a short nose with a broad nasal tip, wide mouth, full cheeks, full lips, and a small chin. People with WS are also likely to have a long neck, sloping shoulders, short stature, limited mobility in their joints, and curvature of the spine. Some individuals with WS have a star-like pattern in the iris of their eyes. Infants with WS are often irritable and colicky, with feeding problems that keep them from gaining weight. Chronic abdominal pain is common in adolescents and adults. By age 30, the majority of individuals with WS have diabetes or pre-diabetes and mild to moderate sensorineural hearing loss (a form of deafness due to disturbed function of the auditory nerve). For some people, hearing loss may begin as early as late childhood. WS also is associated with a characteristic “cognitive profile” of mental strengths and weaknesses composed of strengths in verbal short-term memory and language, combined with severe weakness in visuospatial construction (the skills used to copy patterns, draw, or write). Most older children and adults with WS speak fluently and use good grammar. More than 50% of children with WS have attention deficit disorders (ADD or ADHD), and about 50% have specific phobias, such as a fear of loud noises. The majority of individuals with WS worry excessively.

Unfortunately there is no cure for Williams syndrome, nor is there a standard course of treatment.

The prognosis for individuals with WS varies. Some degree of impaired intellect is found in most people with the disorder. Some adults are able to function independently, complete academic or vocational school, and live in supervised homes or on their own; most live with a caregiver.

Where you can find additional information about Williams syndrome:

You may find the following resources about Williams syndrome helpful. These materials are written for the general public.

• MedlinePlus – Health information (4 links)

• Genetic and Rare Diseases Information Center – Information about genetic conditions and rare diseases (2 links)

• Additional NIH Resources – National Institutes of Health (2 links)

• Educational resources – Information pages (7 links)

“”Chronic kidney disease (CKD) affects more than 1 in 7 U.S. adults—an estimated 35.5 million Americans.1 For Americans with diabetes or high blood pressure—the two most common causes of kidney disease—the risk for CKD is even greater. About 1 in 3 people with diabetes and 1 in 5 people with high blood pressure have kidney disease.1 Other risk factors for developing kidney disease include heart disease and a family history of kidney failure.

Despite the prevalence of kidney disease in the United States, as many as 9 in 10 adults who have CKD are not aware they have the disease.1 Early-stage kidney disease usually has no symptoms, and many people don’t know they have CKD until it is very advanced. Kidney disease often gets worse over time and may lead to kidney failure and other health problems, such as stroke or heart attack. Approximately 2 in 1,000 Americans are living with end-stage kidney disease (ESKD)—kidney failure that is treated with a kidney transplant or dialysis.”

National Institute of Diabetes and Digestive and Kidney Disease NIH-NIDDK (https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease)”

“Kidney failure is a condition in which one or both of your kidneys no longer work on their own. Causes include diabetes, high blood pressure and acute kidney injuries. Symptoms include fatigue, nausea and vomiting, swelling, changes in how often you go to the bathroom and brain fog. Treatment includes dialysis or a kidney transplant.”

Cleveland Clinic (Kidney Failure: Stages, ESRD, Causes, Symptoms & Treatment)

Chronic Renal or Kidney Disease (CRF):

In giving a short and easily understandable definition Chronic kidney disease happens when your kidneys no longer filter your blood the way they should, so wastes (toxins, usually end products of an acid) build up in your blood. This has probably been going on for years, and it may keep getting worse over time. Just like a car engine damaged but still using the car without getting the engine repaired sooner or later in time the engine no longer functions the same with any organ of the body getting damaged by some long term condition. If your disease gets worse and worse over time, you could have kidney failure or some multi organ failure, depending on the condition causing this.

Regarding Chronic Kidney Failure the causes can be:

** Diabetes (uncontrolled diabetes (Type 1 or 2) for many years.

** High blood pressure for many years.

These are the top 2 causes of most chronic kidney disease. Controlling these diseases can help slow or stop the damage to the individual’s kidneys who has one of these, if not both.

Other common causes of chronic renal failure (CRF) include:

-recurring pyelonephritis (kidney infection)

-polycystic kidney disease (multiple cysts in the kidneys

-autoimmune disorders such as systemic lupus erythematosus.

-hardening of the arteries, which can damage blood vessels in the kidney.

-A narrowed or blocked renal artery. A renal artery carries blood to the kidneys. Know this for starters, each of your kidneys has about a million tiny filters, called nephrons. The nephron is the tiny filtering structure in your kidneys. Each of your kidneys contain more than a million tiny filtering nephrons that help clean your blood removing toxins dumping them into your urinary bladder so you can evacuate them though urine (urea, urine; get it). Your nephrons play a vital role to our essential daily living. If over a long time you have a renal artery blocked the nephrons stop their function and die.

Remember the nephrons help all humans do the following if there kidneys or one kidney is functioning properly:

-Remove excess water, wastes (like urea, ammonia, etc.) & other substances from your blood.

-Return substances like sodium, potassium or phosphorus to the body whenever any of these substances run llow in your body or do the opposite if they run high to evacuate them through voiding dumping the sodium or phosphorus or potassium in the urinary bladder through the tube from the kidneys to the urinary bladder called ureters.

**If nephrons are damaged by the high sugar content or high blood pressure in the kidneys, they stop working. For a while, healthy nephrons can take on the extra work or overload. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you’re blood filtered properly to keep you healthy. Just like running from a bear in the street chancing you. We can run only so long but sooner or later we will run out of energy and not be able to run anymore, same concept for the kidney nephrons when they run out of enough energy due to the kidneys not properly working.**

The symptoms can be:

Urinate less than normal.

Have swelling and weight gain from fluid buildup in your tissues. This is called edema.

Feel very tired or sleepy.

Not feel hungry, or you may lose weight without trying.

Often feel sick to your stomach (nauseated) or vomit.

Have trouble sleeping.

Have headaches or trouble thinking clearly.

So what will you do GO TO A DOCTOR OR CALL 911 AND GO TO THE ER:

Your doctor will do blood and urine tests to help find out how well your kidneys are working. These tests can show signs of kidney disease and anemia. (You can get anemia from having damaged kidneys.) You may have other tests to help rule out other problems that could cause your symptoms.

To diagnose chronic renal failure is pretty much the same tests that are listed above on acute renal failure plus:

Chronic kidney disease is also called chronic renal failure or chronic renal insufficiency.There are five stages of kidney disease, from kidney damage with normal GFR to kidney failure.  So GFR will help the MD rule out acute versus chronic to give the MD direction on Rx.Your doctor will ask questions about any past kidney problems. He or she will also ask whether you have a family history of kidney disease and what medicines you take, both prescription and over-the-counter drugs.

Diagnosis & Treatment (Rx) for Chronic Kidney (Renal) Failure (CRF):

There are things you can do to slow or stop the damage to your kidneys. Taking medicines and making some lifestyle changes can help you manage your disease, prevent further damage to the kidneys, if their functioning at all and make you possibly feel better.

Kidney disease is a complex problem. You will probably need to take a number of medicines and have many tests. To stay as healthy as possible, take your medicines just the way your doctor says to and work closely with your doctor.

Go to all your appointments for the MD to see a increase in function or decrease in function of your kidney or kidneys you have still functioning to a level. To do that you can’t just go every 6 months especially when first diagnosed with it or with a collapse of an exacerbation of kidney failure in a worse level that brought on new symptoms that brought you to the ER.

Lifestyle changes are an important part of your treatment. Taking these steps can help slow down kidney disease and reduce your symptoms. These steps may also help with high blood pressure, diabetes, and other problems that make kidney disease worse or made the kidney disease happen with the secondary diagnosis you had originally for years (ex. Hypertension or Diabetes if not both especially is uncontrolled)

Very hard, never a complete 100 % resolution. It is like emphysema done by smokers the damage is done or like a heart attack the area of the infarction=damage is already done to the heart muscle.

Scared now, understandable but unfortunately the damage is done, so its get the organ to its optimal level of functioning or replace the damaged kidney (s) through a transplant of one.  You need to know this, do it if you want to live LONGER.  Remember fear is fear itself, the fear run it over and deal with what you have and make your life longer & better!  It’s all up to you.  HANDSOME I know you can do it , I am there for you as a good friend and professional RN and I would love you to last longer John!! XO

You may have a test done that lets your doctor look at a picture of your kidneys, such as an ultrasound or CT (Cat Scan of the kidneys). These tests can help your doctor measure the size of your kidneys, estimate blood flow to the kidneys, and see if urine flow is blocked. In some cases, your doctor may take a tiny sample of kidney tissue (biopsy) to help find out what caused your kidney disease.

Chronic kidney disease is caused by damage of the kidneys whether the cause of it be primary a Renal or Kidney problem or a secondary, another disease or disorder that affects the kidneys in doing their job, like hyperglycemia related to a individual with uncontrolled diabetes, for instance.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

One way to measure how well your kidneys are working is to figure out your glomelular filtration rate (GFR). The GFR is usually calculated using results from your blood creatinine test.

Then the stage of kidney disease is figured out using the GFR (glomelular filtration rate). There are five stages of kidney disease, from kidney damage with normal GFR to kidney failure.

Your doctor will do tests that measure the amount of urea (BUN) and creatinine in your blood. These tests can help measure how well your kidneys are filtering your blood. As your kidney function gets worse, the amount of nitrogen (shown by the BUN test) and creatinine in your blood increases. The level of creatinine in your blood is used to find out the glomerular filtration rate (GFR). The GFR is used to show how much kidney function you still have. The GFR is also used to find out the stage of your kidney disease your in if you have it and its to guide decisions about treatment. *

“Acute kidney injury happens when the kidneys suddenly can’t filter waste products from the blood. When the kidneys can’t filter wastes, harmful levels of wastes may build up. The blood’s chemical makeup may get out of balance.

Acute kidney injury used to be called acute kidney failure. Acute kidney injury is most common in people who are in the hospital, mostly in people who need intensive care.

Acute kidney injury ranges from mild to severe. If severe, ongoing and not treated, it can be fatal. But it also can be reversed. People in otherwise good health may get back typical or nearly typical use of their kidneys.”

MAYO CLINIC (Acute kidney injury – Symptoms and causes – Mayo Clinic)

“National Kidney Foundation Recognizes March as National Kidney Month and World Kidney Day as it Celebrates a Key Milestone

New York City, NY – (March 10, 2025) — The National Kidney Foundation (NKF) is recognizing a special milestone this March during National Kidney Month. NKF is celebrating 75 years of transforming lives through kidney health advocacy, research, and innovation. As part of the celebration, NKF is launching “75+You” this Thursday, as part of World Kidney Day on March 13th, to rally communities nationwide in the fight against kidney disease and highlight how, together, we can make an impact on millions of lives.

Did you know that one in ten people will have a kidney stone over the course of a lifetime? Recent studies have shown that kidney stone rates are on the rise across the country. Those in the know believe that some major misconceptions may be the culprit.”

National Kidney Foundation (75 Years of Transforming Kidney Health | National Kidney Foundation & Six Easy Ways to Prevent Kidney Stones | National Kidney Foundation)

Tips to Making Better Sleep

May is Better Sleep Month! Take advantage of this time to create better sleep habits that lead to more restful sleep for a lifetime. We’ve created a list of tips on how to encourage better, healthier sleep at night, naturally. Challenge yourself to put them in practice for the rest of Better Sleep Month—and, hopefully, thereafter.

1.)  Create a Sleep Schedule

Try going to bed at the same time every night and waking up at the same time every morning, even on the weekends. Sticking to a sleep schedule will train your body to recognize your set bedtime and allow you to adapt to a proper waking and sleeping cycle. If you frequently change the time you wake up or go to bed, your body won’t be able to adjust to a regular sleep schedule. Make an effort to schedule times that leave room for about eight hours of sleep each night. To help you stay on track with your new May sleep schedule, mark your calendar with the times you wake up and go to bed each day. Using your sleep calendar to log which days you aren’t falling asleep at the proper time might help you identify the reasons why—for example, drinking too much coffee late in the afternoon or stress from a big day at work. Writing out your sleep schedule and any troubles will help you visualize the steps you can take to improve your sleeping patterns.

2.)  Stick to a Rigid Bedtime Routine

Daily activities impact your circadian rhythm and allow your body to anticipate upcoming events. Our bodies crave consistency, so developing a rigid bedtime routine will help signal to your body when it’s time to rest. Create a bedtime prep checklist to ensure you are preparing your body and brain for sleep the same way nightly. Good nighttime rituals include reading, meditating, brushing your teeth, closing the blinds, and getting under the covers. Your bedtime routine is personal to you, so take some time this month to think about the steps you’ll take to prepare yourself for quality sleep most comfortably.

3.)  Turn Off Electronics

Light cues from your environment can be detrimental to your sleep patterns and circadian rhythm. The light from electronics works as a stimulant in your brain, sending a confusing signal to wake up when it may actually be time for bed. Challenge yourself to keep electronics out of your bedroom this month, and record the nights you are successful on your sleep calendar for motivation. Put your phone and laptop in another room and click off your television before beginning your bedtime rituals. Try using a traditional alarm clock instead of your phone to avoid the temptation to check your texts or emails before bed. Your body and mind will thank you for the opportunity to relax and wind down in a dark space so you can easily fall and stay asleep.

Stop Hitting Snooze

Make May the month you stop hitting the snooze button in the morning. Although getting an extra five minutes of sleep sounds pleasant, it’s actually more harmful than beneficial for your body. Snoozing your alarm is detrimental to your natural sleeping patterns and damages the consistency your body has been working so hard to achieve. It can also make you feel more tired or groggy throughout the day. If you are an avid snoozer, try putting your alarm clock on the other side of the room this month to force yourself to get out of bed to turn it off.

Make Sleep a Priority in your life

Hold yourself accountable to making better sleep a priority today and thereafter. While it’s important to do this always, concentrating on healthy sleep habits for just one month could set you up for a lifetime of quality sleep. If you succeed at doing these sleeping changes, you might just have restful nights and productive days and reach the goal you have wanted for so long, good sleep.