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Use Caution When Researching Treatments Online
When a child is diagnosed with a brain tumor, families and friends often rally around the child and encourage the family to seek out any resources, services, and treatments that are available. At times this can lead families to take drastic measures they would typically not make. Recently, an episode of 60 Minutes featured a story about an American doctor in Ecuador who is selling stem cells to medically vulnerable individuals with the promise/hope of curing their illnesses. While there has been a lot of discussion over the potential benefits of using stem cells, for many illnesses, the current research is years away from utilizing stem cells in a safe and effective way.
It is extremely sad to me that families facing illnesses may be taken advantage of. Many of them are faced with a medical crisis that modern medicine cannot solve and therefore are seeking any type of treatment which may prolong the life of a loved one. In situations like these, families become vulnerable to the eccentricities of the internet and the promises of unreliable websites. So how do you seek out safer alternatives for yourself and your family when you face a medical crisis that neither Western nor Eastern medicine seem to be able to solve?
To help find safer alternatives your current treatment team is going to be your best resource. They understand your loved ones medical history the best and may know of current clinical trials being held for that particular illness. Clinical trials are what help the advancement of treatments and care for children with brain tumors and other illnesses. The current treatment team may know of researchers or specialists that treat the illness and may be able to set you up with a consultation. Additionally you are free to search for clinical trials on your own, however be careful where you look. There are several reputable and safe sites that list current research being done throughout the country. They are curesearch.org, clinicaltrials.gov, and cancer.gov.
Speaking with others in a similar situation is a great way to share resources, talk about common feelings, and gain support from someone else who “gets it”. Our Family to Family Network can foster these types of relationships. We have a National directory of families and survivors who have been trained to be peer mentors and are available to help support families going through a crisis. If you are interested in this program, please contact us at 866.228.4673.
No family should be left to wander this path alone, nor should any family be taken advantage of when facing such desperate circumstances. Thanks to 60 Minutes for sharing this story and ultimately creating awareness and educating families!
If you question the validity of a treatment or website, here are some questions to ask:
1. How many patients have they treated with your (your child’s) particular illness?
2. Can you speak with SEVERAL patients/families they treated as a reference?
3. What are the credentials of the treatment providers/founders?
4. Have they received FDA approval for treatment or clinical trials?