ALTERNATIVE HEALING
LIVING WITH SICKLE CELL DISEASE:
EVALUATING THE ALTERNATIVES
Deborah Oster Pannell
August, 1999
Introduction:
How do we in the sickle cell community greet the news of new, experimental treatments and procedures? And what about so-called "alternative" treatments? How do we incorporate them into our lives in a balanced way?
Clearly, we are at an age in the development of medical science where ideas that only a few years ago seemed more like science fiction are now within the realm of possibility. With the successful mapping of the human gene, the prospects of altering human genetic structure to treat inherited illnesses such as sickle cell disease seem to be well within our grasp. Recent medical breakthroughs have ushered in a whole new group of treatment therapies, some more radical than others.
Hydroxyurea, a chemotherapeutic drug that has been used successfully in the treatment of AIDS and cancer, passed very quickly from experimental trials into regular use in the treatment of the painful symptoms of sickle cell disease and during the last couple of years, it has been helpful to many individuals in decreasing the frequency and severity of their pain crises. More dramatically, we have seen the recent use of bone marrow transplants from sibling donors that has helped a small number of children and adolescents with sickle cell disease. This radical treatment, while heralded as a "cure" for sickle cell disease, is not yet practical for wide use, as only a small number of individuals actually qualify for the procedure, and then it is not without a variety of serious risks, including death. Of course for those in whom the transplant has been successful, there has been a complete reversal of the disease. For these lucky few, it had indeed been a miracle cure.
Additionally, there have been encouraging reports about a drug called CPC-111, which is said to prompt fetal hemoglobin regeneration and facilitate blood flow, and a drug called Flocor, currently in clinical trials, which has shown promise in lessening the severity of painful crises including accompanying bouts of acute chest syndrome.
There are also many people who swear by the positive effects of certain herbal medicines, vitamins, changes in diet, the regular practice of yoga, meditation and self hypnosis, as well as other forms of treatment such as acupuncture, massage, and chiropractic. What are we to do, when there are so many choices before us? How do we know in which direction to turn and in whom to believe?
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Independent Thinking
S.C.A.R.E, Inc. has prided itself on being an advocate of self-reliance and independent thinking. This means that we encourage people to carefully evaluate their choices before deciding to move in any given direction with regard to treatment. The first step towards being an independent thinker is to become as educated as possible with regard to this disease. We must all become well versed in the basics of sickle cell pathophysiology (the way in which the disease manifests). We have to be able to understand what our bodies or the bodies of our loved ones are doing. Although sickle cell disease varies greatly from person to person, there are certain basics we can all learn and apply to our own situations. Secondly, we must become familiar with the specifics of our own experience with the disease. How does sickle cell behave in my body? Or in the body of my partner? My child? My sibling? My parent? Each of us will observe different patterns in the way the disease behaves, and we must be able to discuss the details of our own experience, particularly when communicating with doctors, nurses or other individuals who are in a position to assist us in times of distress. Thirdly, since sickle cell treatment is such a specialized field, it is important to consult physicians who are experienced in the clinical treatment of sickle cell disease and can advise us from their own work and that of their colleagues as to what our options are with regard to the ongoing management of this illness.
OK, so let's say we go to the library or we get on the internet (or both), and we read as many books and articles as we can find on the history of sickle cell, the complications that regularly occur and the various treatments currently being used. Then what? By this time, we should have already concluded that there is not yet a cure for sickle cell disease. That is to say, there are several treatments that have helped people in different ways, and there are some procedures that have actually eradicated the illness in a number of lucky individuals, but there has not yet been a proven cure that will work for all persons with sickle cell disease. As far as new, promising treatments go, it is best to approach these with cautious optimism. For every new treatment we hear about that shows some promise, there are at least five treatments that were tried and shown to be unsuccessful in the past. It is difficult to have one's hopes repeatedly raised and lowered, so it is usually best to guard against getting too excited until significant clinical trials have been done to prove the efficacy of a new treatment. Of course we must remain hopeful, but we can't allow ourselves to be jerked about by false expectations. Such emotional upheaval takes its toll after a while, and with sickle cell defiers, that toll usually ends up to be physical.
I think we can take a lesson from the AIDS community in this regard. General wisdom regarding AIDS treatment has basically been to remain as healthy as possible while treatments and cures are being developed. This way, individuals will be in the best shape to receive these treatments when they finally do come down the pike. Basic rules of diet and fitness apply here, modified where necessary to fit the needs of the sickle cell defier's body. Good food, vitamins, regular exercise of some sort, no alcohol, smoking or recreational drugs, healthy relationships with loved ones and an overall positive outlook on life are all elements of maintaining health that are relevant to any person's well-being. For the sickle cell defier, concentration on these aspects of our lives becomes twice as important in managing the additional challenges to the body and spirit brought on by the disease. This advice goes to the care partners and family members of sickle cell defiers as well. We can often carry a tremendous burden, both physically and emotionally, in helping our loved ones to cope with the rigorous demands of their disease. We have to remember to take care of ourselves, as well, or we will not be helping anyone.
Exploring Alternatives
This inevitably brings us to the discussion of so-called "alternative" treatments, and the relative benefits to be found in their exploration. I myself have worked in the field of Chinese medicine, which includes acupuncture and Chinese herbs, for the last 10 years. Many people turn to acupuncture for help in dealing with chronic conditions, such as asthma and allergies, menstrual disorders, digestive disturbances, as well as chronic pain of various kinds. My earliest experience in trying to apply the benefits of acupuncture towards the treatment of sickle cell disease is a case in point of what not to do. It was the fall of 1988, and Ivor, my husband, was exhibiting all the classic signs of a bout of acute chest syndrome. In a state of panic, I insisted that he come with me to the acupuncturist to get treated so that we could try and prevent a hospitalization. I had seen Ivor hospitalized several times already for rather serious crises, and I was terrified at the prospect of seeing him go back there again. I was sure that I had found something that could help him avoid such a fate. Needless to say, we embarked on what was for him a very long and painful ride to the acupuncture office, whereupon he endured what would normally be a pleasant, calming treatment. This time, however, he was in agony, and the needles didn't do a thing for him except delay us in getting him to the hospital, whereupon he was immediately admitted to the intensive care unit with a severe case of acute chest syndrome. We were lucky, in that he recovered fully, but it might not have ended so happily. As most of you probably know, acute chest syndrome is the number one killer of adult sickle cell defiers, and symptoms of onset must be treated swiftly in the hospital, or the person may die. It's that simple, and that serious.
The positive thing to eventually come out of this experience is that we learned how Chinese medicine could be helpful during times when Ivor was not in the middle of an acute crisis, or when he was enjoying periods of relative stability. It is during these times that we have used acupuncture and Chinese herbs to facilitate in the management of minor aches and pains, increase overall energy and stamina, regulate and harmonize his sleep patterns and digestive functions, and significantly reduce stress, which if left unchecked can often precipitate a crisis. In this way we have been able to incorporate Chinese medicine into Ivor's (and my) total healthcare regime, in order to maintain better balance and harmony in our day to day well being. I would not insist that every sickle cell defier go out tomorrow and begin receiving acupuncture treatments. However, I can recommend from personal experience the benefits I have observed and encourage people with sufficient resources to explore the possible benefits for themselves.
A Balanced Approach
Over the years, we have encountered a number of individuals who perceive healthcare as divided into two opposing camps: western medicine (also referred to as allopathic or modern) vs. holistic medicine (also referred to as alternative, herbal, eastern, traditional, natural, homeopathic or organic). There are those western physicians who regard anything outside of their body of knowledge as being too risky, too experimental, (ironic when some of these medical systems are thousands of years old), or just plain quackery. Then there are those people in the other camp who regard anything of chemical origin, such as drugs or medication to be evil, and western doctors to be untrustworthy agents of the multi-national pharmaceutical industry. Neither approach is balanced, nor takes into account the good that each "side" has to offer. It is our belief in S.C.A.R.E., Inc. that there is no one medical system that has all of the answers. Each one has something to offer us if we only take the time to explore it carefully. We maintain that true holism occurs when one accepts knowledge from every direction. There are certain aspects of western medicine that can be vital to our survival, such as antibiotics and other medications, surgical techniques, blood transfusions and emergency interventions. There are also certain elements of traditional medical systems that can be vital to good health, particularly in the areas of stress management and energy maintenance, as well as a whole host of chronic and acute conditions that don't respond well to western techniques. What often works well is a partnership between different medical systems. A terrific case in point is the use of acupuncture, herbal medicine and massage to offset the negative side effects (e.g. nausea, fatigue, and weakened immune system) from the radiation and chemotherapy commonly used in cancer treatment. Many people also advocate the use of proper diet in strengthening the body against the assault of such potentially invasive and toxic therapies.
We in the sickle cell community need to become familiar with the relative benefits available to us from the variety of medical systems in existence, and learn to incorporate them into a total healthcare regime that is right for us. While we are waiting for scientists to provide us with effective treatments or a cure, it is our responsibility to take care of ourselves as well as one another. There is much we can do to inform ourselves so that we will be in a better position to evaluate the advice we are getting from our doctors. We must become more adept at being self-sufficient and taking steps on our own behalf. The important thing to remember is that each person is different, and although we have much to learn from one another's experience, it would be a mistake at this point to believe that there is only one right answer for the entire sickle cell community. If anything, it is our tremendous variability and individuality that makes us such a strong, dynamic and vital community.
Continuing the Dialogue
Clearly, there is much to learn and explore in the area of experimental and alternative treatments for sickle cell disease. As this site develops we will bring a series of articles discussing various non-traditional treatment therapies and healthcare modalities that may have usefulness to the sickle cell community. It is important to keep in mind, however, that there is no one approach that works for every person. We at defiers.com want to encourage our readers to keep an open mind and consider the alternatives that seem most appropriate for you or your loved one. Adapt the information for your own use in a way that feels comfortable, and discard anything that does not seem to suit your particular needs.
To facilitate dialogue on these issues, defiers.com has established several methods of sharing your ideas and experiences with other members of the sickle cell community. In our Contact section you can access the bulletin board or the coollist to post messages or send e-mail to other defiers, family members and friends. As we learn from one another, we will only strengthen our community through an increased awareness of how we can indeed empower ourselves.
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