Ouch That Hurts! Why Do Sickle Cell Diseases Cause So Much Pain?

Sickle Cell DiseasesThe most common symptom of sickle cell disease is pain. Many of those who suffer from Sickle Cell diseases deal with a great deal of pain, which many times leads to emergency room visits. Not all patients with Sickle Cell diseases experience pain, though.

During painful crises, pain may emanate from the bones, usually in the arms, hands, legs, feet, or back. There may also be pain in the stomach or abdomen, or in the chest.

Other than pain, there are additional health problems that those with sickle cell disease may experience.

People with sickle cell disease are more likely to get infections.
Sickle cell disease can cause anemia (or a low blood count), which can make people to feel tired.
Organs (such as the liver and kidneys) can be damaged if too many large blood vessels in the area are blocked and the organs do not get enough oxygen.
People with sickle cell disease may suffer from “acute chest syndrome,” which is difficulty breathing and severe chest pain.
People with sickle cell disease may have problems with their eyes as a result of blockages in small blood vessels.
Skin ulcers, or sores on the skin that do not heal well, may develop, especially on the lower legs.

Unfortunately, there is no cure for sickle cell disease. There are treatments and precautions, however, which can help treat the disease, prevent painful sickle cell crises, and relieve pain.

Some sickle cell crises can be prevented by avoiding situations that bring on the crises. This includes avoiding exposure to cold weather, getting plenty of sleep and rest, being careful not to exercise too hard, and drinking plenty of fluids.

Treating the Pain of Sickle Cell Diseases
Emergency room visits are common to treat the pain of a sickle cell crisis. Some sickle cell patients have had bad experiences in emergency rooms and hospitals because health care professionals have questioned their pain and their desire for pain medications. Some may even have been accused of being addicted to pain medications. Health care professionals need to understand that wanting medications to help the pain of a sickle cell crisis does not make a patient a drug addict. Bad experiences with medical professionals lead many sickle cell patients to distrust health care professionals. It is important for patients with this affliction to find doctors who understand their disease and are sympathetic to their distress.

For many patients, taking opioid medications daily can be extremely helpful during painful crisis, along with additional pain medications. The daily opioids can help reduce the number of crises and make the pain less severe. This may cause patients and their family members to worry about addiction.

Other medications that may be prescribed by a doctor for relief from sickle cell pain are:

Hydroxyurea
Anti-inflammatory medications, such as ibuprofen
Steroids
Certain antidepressant medications or anticonvulsant medications that also help relieve pain

Not all treatments involve drugs
There are non-drug treatments that can ease the pain of Sickle Cell diseases, or prevent the pain from happening in the first place. Physical therapy can be used to incorporate gentle exercises and heat and cold treatments to help with sickle cell disease pain.

Some patients also find that seeing a psychologist helps cope with the illness or in learning new techniques to help control the pain.

Doctors Allan Platt, Lewis Hsu and Silvia Brandalise are working on a new version of their best-selling Hope & Destiny, written specifically for adolescents with Sickle Cell Diseases. The book will be out early 2013, along with a coloring book for younger children afflicted by the diseases.

September is Sickle Cell Disease Awareness Month

Sickle Cell Awareness MonthChicago, IL, Aug. 24, 2012—Sickle Cell disease occurs in one out of every 500 African American births. Sickle Cell Trait occurs in approximately one in every 12 African Americans. An estimated 100,000 Americans live with sickle cell disease and millions of individuals are affected worldwide.

The 3rd edition of Hope & Destiny, The Patient and Parent’s Guide to Sickle Cell Disease and Sickle Cell Trait, by doctors Allan Platt, Lewis Hsu and James Eckman, provides clear-cut and in-depth information for those living with sickle cell disease.

The first two editions of Hope & Destiny were groundbreaking: they were the only books published on sickle cell disease and trait that explained all of the facts in informative, easy-to-read and compassionate terms. “This is a tremendous piece of work,” said Louise Dorn, R.N., of the Sickle Center of the University of Illinois Medical Center. “It has put into one volume information that is usually spread over many publications, and in terminology the lay person can read and understand.”

This new edition contains even more to help patients and their loved ones live better, fuller and longer lives—emotionally, spiritually and physically. Here are the most current treatment regimes, including the newest medications, strategies for navigating the healthcare system, insights to help patients and loved ones cope with the emotional and psychological distress created by sickle cell, and more.

This edition also features a preface by Tionne Watkins, Grammy-winning recording artist, also known as T-Boz. Watkins is the national spokesperson for the Sickle Cell Disease Association of America.

Click here to download the full press release.

How Is Sickle Cell Disease Treated?

Sickle Cell AnemiaSickle Cell disease occurs in one out of every 500 African American births. Sickle Cell Trait occurs in approximately one in every 12 African Americans. An estimated 100,000 Americans live with sickle cell disease and millions of individuals are affected worldwide.

Sickle cell disease and trait can be very painful and can cause organ damage. It is a disease in which your body produces abnormally shaped red blood cells. The cells are shaped like a crescent or sickle, hence the name. These blood cells don’t last as long as normal blood cells, which leads to anemia.

People with sickle cell disease are born with two sickle cell genes, one from each parent. Those with only one sickle cell gene, have sickle cell trait. A simple blood test can show if you have either.

How Is Sickle Cell Anemia Treated?

The goal of treating the disease is to relieve pain, prevent infections, organ damage and stroke, and to control other complications. Sickle cell anemia has no cure, but treatments can help relieve symptoms and treat complications.

People who have sickle cell anemia need regular medical care and hematologists specialize in treating those who have the disease.

Caring for someone with sickle cell disease is challenging and can be stressful for the whole family. Often, others in the family worry about becoming ill with the disease. Sickle cell disease is inherited and cannot be “caught” or spread from person to person in the air or by blood transfusions. Parents who learn about the disease are more likely to be able to help their children deal with the disease in the best ways possible.

Learning more about sickle cell disease can help individuals feel more comfortable when taking care of loved ones with the disease. It can be difficult to learn about a disease when you do not know where to start. You should read as much as possible and ask medical experts about the disease, and find medical practitioners who understand the disease. There are many wonderful resources on the web, starting with the Sickle Cell Association of America http://www.scdaastore.org/books.

Finding Health Resources You Can Trust

Anyone can post information on the Web. There is no quality control over any information on the Web. Therefore, you need to be careful when looking for health resources and health information over the Internet.  It is not always easy to tell the difference between valid, helpful resources and information that is not accurate or even worse, harmful.

Health Resources

You are responsible for reviewing the information you find carefully and with a discerning eye. Here are some helpful tips when evaluating the health resources you find online.

  1. Has the health resource been peer reviewed?  A valid health resource will have noted author(s) with their credentials listed.
  2. Who is disseminating the information? Who is the source—the institution or individual—responsible for the information? Is there a street address or telephone number?
  3. Does the producer of the information have conflicts of interest or commercial sponsorship?
  4. When was the information or health resource posted to the Internet? Has it been updated since its original publication?
  5. Who is paying for or sponsoring the site that the resource is housed? Who is the intended audience?
  6. Is the Website the health resource is on also selling products related to the information?
  7. Does the resource or information include references?
  8. Does the information correspond with similar information you’ve found from other sources?

Be careful when searching the Web for health resources. Always check with your doctor before practicing any of the recommendations you find on the Web or before recommending health resources to others.

At Hilton Publishing, all of our health resources and publications are peer reviewed, accurate and up-to-date. You can also find timely, informative health information at www.myhealthyweightandwellness.com.

Can You Disconnect?

Unwind

Unwind

My family and I recently returned from a family vacation at a beach in North Carolina. It was heavenly. What I found most appealing about this vacation was that I was able to leave my Blackberry in my room for hours at a time and just completely disconnect from the world, and all of my worries, deadlines, stresses…

My boys enjoyed their “downtime” mom, who wasn’t constantly checking email or making calls. I learned to let go and relax, really relax. Every time a thought about work came into my head, I dismissed it! Best vacation ever.

How about you? Are you able to take a vacation from your iPhone, your computer, your endless commitments at work?

I recently polled a bunch of friends and a few strangers as to whether they are able to completely disconnect and take a vacation. I got a variety of answers. Some of the responses alarmed me.

Many of those I talked to said they were able to partially disconnect, meaning they would check voice and emails in the mornings, spend time with their families and then check in again in the afternoon. A couple of people said they actually turned their electronics off all day and only checked them at night for emergencies dealing with family.

Then there were those individuals who said “time is money and clients don’t wait for me to get back from vacation.” One woman who has her own business, along with a husband and two small children, told me no, she has no time to disconnect during vacation. She clears a salary of about $350,000 a year and her husband is a lawyer. She said she looked at how much revenue she would lose if she took a week off of work and asked herself, “Is it really worth it.” Her answer was no.

Really? Taking time to focus and spend quality time with your children, your husband, is not worth losing one week’s worth of revenue?

Everyone has their priorities. I’d like to suggest we adopt the model of many European countries where companies pretty much shut down for the month of August and everyone goes on holiday. Sounds nice, huh?