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Sickle Cell Anemia
Alternative Treatments Promise to Ease the Pain

By Shirley Vanderbilt

Copyright 2003. Associated Bodywork and Massage Professionals. All rights reserved.


Thousands of years ago, malaria swept parts of Africa, India, the Mediterranean and the Middle East, ravaging the human population. Among the survivors, it is surmised, were children carrying a mutation of the hemoglobin gene -- hemoglobin S, or sickle cell trait -- which protected them from the invading red cell parasites.1 Some of their descendants, a variety of ethnic groups including Africans, Greeks, Italians, Turks, Iranians and Asiatic Indians2 passed on the trait as they intermingled and migrated to other areas. This mutated gene continues to provide a survival advantage to those in malarial regions, but it also poses a great risk to the carriers' children. Upon inheriting two abnormal sickle hemoglobin genes, a child may develop the painful, chronic condition of sickle cell disease (SCD), also referred to as sickle cell anemia.3

Affecting more than 70,000 Americans,4 SCD is a blood disorder in which normally doughnut-shaped red blood cells take on a distorted, sickled form, disrupting flow through the vessels by catching on each other, clogging up and breaking apart. This can result in episodes of severe pain, damage to the body and anemia.5 Medical management of these episodes generally includes pharmacologic agents, hydration and blood transfusions, sometimes with limited success. In the past, SCD has been considered an incurable disease, but recent research has shown some promise by reversing the condition through the use of bone marrow and stem cell transplants. Studies on gene therapy also underway may bring new treatment approaches within the next decade.6 But for those currently suffering from the disease, each new day arrives with the threat of unbearable pain, hospitalization and possibly death.

While awaiting these "miracle cures," many patients with SCD must continue to contend with a variety of complications. Pain is the most frequent complaint and if localized and chronic, is thought to be a manifestation of bone damage from the accumulation of sickled cells.7 In light of the chronicity of this pain, recent research in the field of complementary and alternative medicine (CAM) has focused on identifying nonpharmacological methods of reducing and coping with these painful episodes. Heavy and continual dependence on drugs for pain management is a concern for both physicians and their patients. Nonpharmacological studies over the past two decades have included techniques such as biofeedback-assisted hypnosis, acupuncture, transcutaneous electrical nerve stimulation (TENS), progressive relaxation and cognitive-behavioral training. These newer CAM treatments have had variant mixed results, with some successes in reducing pain (thus decreasing need for medication and acute medical care), inducing relaxation and increasing coping skills.8

The growing number of scientifically-based studies in massage therapy have shown us that among its proven benefits is the use of massage as an adjunct treatment for pain in several chronic medical conditions and trauma such as burns and surgery. Building on this body of evidence and that specific to SCD, a research team at the University of Florida (UF) in Gainesville, Fla., supported in part by a grant from the American Massage Therapy Association Foundation, initiated a pilot study to determine the benefits of massage therapy and relaxation training for chronic sickle cell pain. Their results are both an expression of the potential power of massage and relaxation, and the frustrating difficulties inherent in treating a population prone to acute medical problems.


The Sickled Cell and Its Victims
In African medical literature, SCD was first reported in the late 1800s. In 1910, James B. Herrick's account of Walter Clement Noel, "the first-to-be-described case of sickle cell anemia," was published by the American Medical Association. This report noted the elongated, pear-shaped form on Noel's blood smear. The medical team followed Noel through several SCD episodes and he reportedly died at age 32.9 During the past century, much has been learned about the sickling process and how to treat its victims, with many of their lives being extended as a result.

Hemoglobin is the "iron-containing pigment of the red blood cells which carries oxygen from the lungs to the tissues."10 The most common hemoglobin is A, in which the red blood cells are a normal rounded shape. People with sickle cell trait have both A and the defective hemoglobin S. Because of the presence of hemoglobin A, these people do not develop SCD, but can pass the trait on to their children. Sickle cell anemia, or SCD, develops when a person inherits two hemoglobin S genes from their parents, therefore having no normal hemoglobin A.11 Other common types of SCD include hemoglobin SC and hemoglobin sickle-beta-thalassemia. In both cases, the individual inherits hemoglobin S and another type of abnormal hemoglobin gene, allowing the S gene to predominate.12

The genes tell the body how to make hemoglobin, therefore the abnormal S genes will continually create the defective substance of SCD. In the process of releasing oxygen to the tissues, the sickle cells may form into rod-like structures and cluster together. The red blood cell then takes on a sickle shape, becoming stiff and unable to flow through the blood vessels. As the sickled cells stack up and block the flow, the organs and tissues of the body are deprived of oxygen-carrying blood. Pain results and damage to organs and tissues can occur, leading to serious medical problems. Normal red blood cells live about 120 days, but the sickled cells last only about 10 to 20 days in the bloodstream. This results in anemia, a condition of chronic shortage of red blood cells, because the body cannot produce cells fast enough to maintain its supply.13

These painful episodes can last for days, with some patients requiring in-patient care for intravenous fluids and heavy pain medication. To treat anemia and prevent further complications, blood transfusions are used to increase normal blood cell count.14 Recent studies indicate that the anti-cancer drug, hydroxyurea, has proven effective in reducing frequency of pain episodes, hospitalizations and transfusions, and other drugs are currently under investigation. Stem cell and bone marrow transplants have enabled some subjects to remain episode-free, and improved medical management of symptoms has increased quality of life for SCD patients with many now living well beyond their mid-40s. Ultimately, scientists hope to use gene therapy to either place a corrected gene into the bone marrow or switch off the defective gene and simultaneously reactivate a protective fetal hemoglobin gene.15 With the current-day genetic engineering of sickle cell mice subjects, these studies have even more potential of uncovering a cure.16


Adjunctive Treatment -- The Pilot Study
Given the frequent and unpredictable pain episodes occurring in SCD, maintaining a consistent participant base for research was no easy task for Dr. Cynthia Myers and her UF associates while conducting their pilot study on massage and relaxation for chronic sickle cell pain. Myers, a Ph.D. graduate in clinical psychology and licensed massage therapist, stated in a recent interview that attendance for session appointments was a major problem in gathering data. Over a period of two years, the team managed to complete their study with a total of 16 adult participants. The mixed-gender group of African-Americans ranged from 20 to 44 years of age. Of this group, 10 were diagnosed with hemoglobin SS disease, two with hemoglobin SC disease and four with sickle cell beta-thalassemia.17

With participants randomly assigned to either a massage therapy (MT) group or muscle relaxation with guided imagery (PMR+) group, treatment sessions were conducted in the hematology clinic from which the patients were recruited. Treatment was considered to be adjunctive and not a replacement for their standard medical care, including analgesics for pain. Originally planned as a six-week intervention, treatment periods were extended to accommodate rescheduled appointments due to "hospitalization for painful episodes, transportation problems and scheduling conflicts." In one case, a total of 33 weeks was required to complete the six sessions, with the mean number being 18 weeks. Twelve of the participants completed the entire six sessions, with four completing at least one MT or PMR+ session.18

Massage sessions consisted primarily of effleurage with coconut oil as a lubricant. The 30-minute treatments were administered by Myers and study-team member Scott Lamp, a licensed massage therapist in private practice in Gainesville. Myers also conducted the PMR+ sessions, instructing the participants in "systematic tensing and relaxing of muscle groups" and, during the final five minutes of the session, guiding them through relaxing imagery.19

To assess the effectiveness of the treatments, researchers administered three measures. A visual analogue scale, 10 cm long, was used to self-rate pain intensity and pain unpleasantness, with ratings obtained before and after each intervention. On this scale, ratings showed consistently short-term reduction of sensory and affective dimensions of pain, with no significant difference between the MT and PMR+ groups. The Sickness Impact Profile and McGill Pain Questionnaire were also administered before the first and sixth sessions for each group. There were no significant effects or interactions noted on either of these measures.20

In order to appropriately generalize results, studies with a larger sample size and a control group would be required, but the data gathered certainly provides a positive base for further investigation. According to the team, the results of the study "suggest that both massage therapy and progressive muscle relaxation with guided imagery show promise as adjunctive interventions for reducing pain short term and longer term" in their stated sample.21 Among her recommendations for future study designs, Myers indicated in-home treatment might eliminate the obstacle of transportation for patients, but cautions that access to medical collaboration would be vital. Speaking from his office in Gainesville, Lamp agreed with Myers that home visits may be a practical option in future research. Although children were not involved in this study, he said, "What I dream of coming out of this is to teach mothers to provide massage to their children. Mothers take on a huge role in the life of the child with sickle cell."

Myers also noted that no ratings were made of pain levels between interventions and "this would be a very important area to evaluate in future research. If I were to do it again," she said, "I would have them rate their pain every few hours, for a few days, to assess changes over time."


Proceeding Cautiously
According to Myers and Lamp, the most important considerations in using massage to ease sickle cell pain are close communication with the patient's physician and knowledge of the disease, its symptoms and complications. The UF study was designed to treat pain between acute episodes and at no time was intervention administered during a pain episode. "When a patient is in an acute pain episode," said Myers, "it is really important for them to get proper medical care." She indicated MTs seeking to work with sickle cell patients should maintain a close relationship with the physician. It is also imperative that MTs recognize medical care as the appropriate intervention during an acute SCD pain episode. One finding of the current study, as pointed out by Lamp, was massage appeared to be a relatively safe treatment and did not appear to be an agent in triggering an acute pain episode. However, MTs need to keep in mind this was a pilot project and no scientific conclusions can be drawn from the results.

As a massage therapist involved in research, Lamp has some suggestions for other MTs interested in following his path. Reflecting on his role in the study, he said, "You need to know massage, but you don't need to know everything about research. I helped the team to set the massage protocol so we had consistency throughout. I would encourage MTs to reach out to anyone they know in the research field. There is a great outcry for scientific data to help support what we're seeing as the benefits of massage therapy. It feels good to be a part of contributing to that knowledge base."

Shirley Vanderbilt is staff writer for Massage Bodywork magazine.


References
1. American Sickle Cell Anemia Association. "FAQS." www.ascaa.org/faq.htm (Feb. 2001.
2. Platt, Allan and Eckman, James. "Sickle Cell Research: Web Update, August 1999." www.emory.edu/PEDS/SICKLE/Research.htm (Feb. 2001).
3. ASCAA, Ibid.
4. Platt.
5. The Sickle Cell Information Center. "Sickle Cell Anemia." www.emory.edu/PEDS/SICKLE/sicklept.htm (Feb. 2001.
6. Platt, Ibid.
7. ASCAA, Ibid.
8. Myers, C., Robinson, M., Guthrie, Jr., T., Lamp, S. and Lottenberg, R., "Adjunctive Approaches for Sickle Cell Chronic Pain," Alternative Health Practitioner 5,3 (Winter 1999): 204.
9. ASCCA, Ibid.
10. Thomas, C., ed., Taber's Cyclopedic Medical Dictionary (Philadelphia: Davis, 1997), 873.
11. ASCCA, Ibid. 12. The Sickle Cell Information Center. "Sickle Cell Anemia." www.emory.edu/PEDS/SICKLE/sicklept.htm (Feb. 2001).
13. ASCCA, Ibid.
14. "Sickle Cell Anemia, Overview/Treatment." http://health.yahoo.com/health/Disease_and_Conditions/Disease_Feed_ Data/Sickle_cell_anemia (Feb. 2001.
15. Platt, Ibid.
16. ASCCA, Ibid.
17. Myers, 205 18. Ibid., 206.
19. Ibid., 206-207.
20. Ibid., 207-208.
21. Ibid., 208.




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