Connective Tissue Disorder Site - Frequently Asked Questions

Contents:

• Dear Web Site Readers
• General Questions
• Supplement Questions

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Dear Web Site Readers,

There are some common questions I see in the email I receive about my website, so I've put many of the the frequently asked questions and my answers on this page. Please note that the questions below are just general, composite type questions from different emails I've gotten over the last year or so. (I don't print anyone's actual emails here or anywhere else on my site.)

If you have a suggestion or comment about my site, you are always welcome to email me. You may also want scan the rest of this page and/or review the topics on my main home page and site map as your question may have already been addressed somewhere on my web site. There is also a search feature on the home page you may find helpful.

Thanks,

Sandy Simmons

General Questions

1. Question: Please send me brochures with more information.

1. Answer: Sorry, I don't have any brochures. This is just my personal website.

2. Question: Do you know of any clinical trials I can get into regarding nutrition and connective tissue disorders?

2. Answer: Sorry, no, I don't know of any clinical trials for nutrition and connective tissue disorders or related features.

3. Question: I'd like to discuss your site with you in more detail. Can you give me a call?

3. Answer: Sorry, but I don't make personal calls regarding my web site. If you would like to contact me, please send me an email. There's a "Contact Me" link to send an email to me at the top and bottom of every page of my site.

4. Question: I'm so glad I found your web site. It's nice to know there is someone else with an interest in nutrition and (Marfan syndrome, scoliosis, pectus excavatum, etc.).

4. Answer: I don't think you are alone in your interest in nutrition and your condition. According to my web statistics, I get over 500,000 visitors a year to my site. I get emails just about every day from people who found my site through researching their conditions and nutrition.

5. Question: Do you know of an email group I could join for (osteogenesis imperfecta, Marfan syndrome, etc.) that is geared towards nutrition and other "alternative" therapies?

5. Answer: I'm not aware of any nutrition oriented email lists for any of these topics.

6. Question: I have been having problems with (heart palpitations, joint pain, chest pains, vision problems, scoliosis, etc.) Do you think I should see a doctor? (or) I did see a doctor for my (heart palpitations, bleeding problems, asthma, etc.). I have this medication he gave me but I'm not sure if it's working. Should I keep taking it?

6. Answer: If you have a health concern, you should seek medical advice for a proper diagnosis and treatment. If you have seen a doctor and have questions regarding his diagnosis or treatment of your condition, then it may be prudent to seek multiple medical opinions.

I have found that there is a big difference between the capabilities and knowledge of different doctors, and seeking a second opinion has often been helpful for me. At one time I saw a physiatrist, a doctor who specializes in body mechanics, for my pain problems. She could find nothing wrong with me and suggested drugs to block the pain. A couple of weeks later I was diagnosed with Ehlers-Danlos syndrome, a genetic disorder, by a different doctor in a different specialty. A year or so later I saw a nutrition oriented doctor and found out I had at least a couple of nutritional deficiencies that can cause joint pain. Changing my diet to correct my nutritional deficiencies really helped my joint pain a lot, so that was obviously the medical advice that helped me the most.

I've been to physical therapists who gave me exercises that actually made my scoliosis curves worse, and then finally found one who helped me get rid of most of my spinal curves and pain through posture, accupressure and stretching exercises. So it pays to shop around and get multiple opinions, if you have that option. If I had not been so persistent in searching for answers to my problems, I'd probably still have scoliosis and be living a life of chronic pain today.

I've compiled a list holistic doctors, for those that are interested. It also includes information about the physical therapist I found helpful.

7. Question: Our family eats very healthy. We are on a (vegan, vegetarian, low fat, low red and/or low red meat diet). Yet we have a lot of health problems in our family (weak connective tissue, cramps, pectus excavatum, hair loss, vision problems, insomnia, scoliosis etc. ). How can we/our kids have so many health problems when we eat so healthy?

7. Answer: If you or your children are not thriving on your current diet, then the logical course of action would be to follow a variation of Desmothene's advice: try changing your diet to see if you can improve your health. I think we all have a lot more control over our own health than conventional medicine gives us credit for, and the main area we can control is our diet.

There is no such thing as a one type of healthy diet that is right for everyone. For example, a diet that is healthy for someone who has has problems with bleeding would most likely not be a great diet for someone suffering from blood clots. Or a diet that is great for someone with a zinc deficiency would not be good for someone with a copper deficiency, as zinc and copper work together in a delicate balance. What is a healthy diet for one person may not be a healthy diet for another. Not everyone thrives on a high carbohydrate, low fat, high fiber diet, which is the diet often recommended by many medical professionals these days. (If you'd like to read more on this topic, I recommend the book Biochemical Individuality by Dr. Roger J. Williams.)

I get a lot of emails from people who's kids either have rickets, or signs of rickets, who are vegans, vegetarians or are on high fiber, low fat, no red meat diets. While a low fat, low red meat diet may be fine for some kids, especially children who are overweight, it may not be the best diet for all children. Children on these types of low meat/low fat diets are more likely to be thin, and body weight is closely linked to the degree of bone density. Thinner people are generally at higher risk for osteoporosis and fractures. Some nutritionists are now questioning whether low fat diets are really good for growing children.

Low fat, high fiber diets are linked to lower estrogen levels. This can be good if you are at risk for estrogen related health problems like breast cancer or blood clots. However, if you have health problems like osteoporosis or problems getting your blood to clot after a wound or surgery, common problems for people with connective tissue disorders, then a diet that lowers your estrogen levels may not be your best choice.

Low fat--low meat diets also may not be good for some adults or children because it is easier to develop biotin, vitamin B12 and zinc deficiencies on these types of diets, as the only foods really high in these nutrients are found in animal products.

I changed my family's diet after reading the book Super Nutrition for Women. We had been on a low fat, high carbohydrate, mostly vegetarian diet, and after reading this book I realized we probably had deficiencies of zinc and other minerals. I had nutritional testing done and I was low in biotin and vitamin B 12, which are common deficiencies among vegetarians. For more information on this topic, see my sections on What Helped Me - Diet.

Supplement Questions

1. Questions: I have Marfan syndrome. Should I take copper and magnesium supplements? (or) I have (mitral vale prolapse, fibromyalgia, etc.,). Will taking magnesium supplements help me?

1. Answer: I can't tell you whether or not you should take supplements, which ones you should take, the right dosages or whether or not they will help your condition. I can't give anyone specific medical advice. Sorry, but I'm just a programmer with a connective tissue disorder and a website. All I can do for people is point out what helped me, plus some other logical nutritional links you may want to consider and discuss with your health care provider.

There are also some very good books with supplement information in my recommended nutrition books section. If you want information on which foods are high in a given vitamin or mineral, which vitamins and minerals are antagonists of each other, recommended dosages, deficiency signs, etc., then the book Encyclopedia of Nutritional Supplements would be a good choice:

3. Question: Many of the symptoms of a deficiency of beneficial bacteria are similar to mine. I was wondering if you knew or could refer me to someone who knows what one needs to do to restore one's normal store of bacteria.

Probiotic supplements are available at most grocery, drug and health food stores. The most common bacteria sold is acidophilus, so if you look for this name, you'll know you are in the right section of the store where probiotics are sold.

For books that helped my connective tissue disorder symptoms, including my scoliosis, TMJ, MVP and fibromyalgia, please see my recommended book list.

Visit my home page or my site map to use my search feature, and see information on connective tissue disorders and related features.

Disclaimer: Statements and information regarding any products mentioned within this site have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure, or prevent any disease or health condition. Any information on this site should be considered as general information only and should not be used to diagnose or treat any health condition.

See your health care provider for a diagnosis and treatment of any medical concerns you may have, and before implementing any diet, supplement, exercise or other lifestyle changes. This site may contain errors.   Use it at your own risk.  Read the rest of our disclaimer and terms of use.

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