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Shelley Ensz

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Posts posted by Shelley Ensz


  1. I'm pleased as punch to announce that Jo Frowde has been promoted to SD World Webmaster and has restored the coding for the website to current standards. Jo is also an ISN Assistant Webmaster for Sclero.org, ISN News Manager, Manager of Sclero Forums, Sclero Forums Chat Host and an ISN Hotline Support Specialist.

     

    SD World began as an email list that was started by Judy Tarro. It was dedicated to providing a place where those who suffer from scleroderma and other autoimmune problems could gather in a warm, friendly forum for an upbeat, open and free exchange of thoughts, ideas and information.

     

    Jude passed away in May 2009, and left her website to the nonprofit International Scleroderma Network (ISN) at www.sclero.org, where she was also a valued volunteer, up to her very last day. (Also see Sclero Forums, and How to Volunteer) Posted 11/11/2016.


  2. Hi Trena,

     

    The "Range" means that anything within those numbers are Normal. As far as I can tell (and I'm not a doctor, in fact I have no medical training at all), the numbers you listed are all in the Normal range.  I can't tell where your ANA number of 9 comes from, or whether or not that is Normal.  Most online systems will flag values that are too high or too low, but keep in mind too that many items can be out of range without signifying a big problem.  For example, usually when we are dehydrated, a lot of values will be high or low, but the doctor can easily infer that it was only some dehydration.

     

    Therefore, it really helps to review blood work with your doctor. And like Jo said, blood tests are not the be all and end all of scleroderma diagnosis. The really important question is, what symptoms are you experiencing that triggered the testing in the first place?

     

    Please let us know what you find out from your doctor, as well.

     

    :hug-group:


  3. I'm fascinated by this article on moldy bagpipes causing lung inflammation, in that sometimes the causes of medical mysteries are found at home, in hobbies, at work...and not in the doctor's office. And, who would ever suspect a musical instrument of causing disease?

     

    Many of us are not aware that mold can grow in surprising places, such as refrigerator drip pans, washing machines, sink overflow valves, in garbage disposals, outdoor furniture, golf bags, in chimneys, trash cans, around window panes, underneath wallpaper or carpeting, inside air conditioners or tubing, etc.

     

    Scleroderma lung involvement can certainly be worsened with mold exposure, so a reminder to us all that it can literally be lifesaving to deal with mold, as soon as we see it or smell it or suspect it, anywhere in our environment.  Even in our bagpipes! 

     

    Where could mold be hiding near you, either at home, or at work, or at play?


  4. Hi Lucysin,

     

    Welcome to Sclero Forums! 

     

    Sometimes surgery can help with localized scleroderma (linear or morphea) lesions. However it is a good idea to consult an expert and not just any run-of-the-mill dermatologist. It might also be possible to get some improvement with disease treatments, such as UVA1 Phototherapy, which seems to enjoy over an 85% improvement rate for localized scleroderma. 

     

    As I understand it (and I am not a doctor, I have no medical training at all), surgical treatment needs to be delayed until the disease is in remission (not actively getting worse).

     

    Another aspect to consider is counseling, and that doesn't need to be either/or (surgery or counseling) as it can be both, together.  I find that it is necessary to always develop an attitude that is bigger than the problem at hand. Sometimes that requires an enormous attitude, that is not easy to come by naturally. Coping skills learned in counseling can benefit all aspects of life, and help us deal with even bigger problems that always eventually come down the pike, for all of us.

     

    It's possible to be happy and have a delightful life even with horrible disfigurements or missing body parts, and it's also possible to be entirely miserable due to a tiny pimple.

     

    Also bear in mind that many super models look just awful without their makeup on, and claim your right to be less than perfect but totally happy with it, because in the end, people respond to our attitudes much more than our looks.

     

    It's worth doing whatever you can to feel better about yourself.  Crank up the attitude factor, use makeup with joy and aplomb, and check out all the medical remedies available to you, as well.  And keep us posted on how you are doing, and how you are feeling. We are always here for you!

     

    :hug-group:


  5. Hi Casey,

     

    I'm sorry to hear that your mother has scleroderma, and that she's having such a difficult time adjusting to it.  It's super that she has a listed scleroderma expert, and that she's on IVIg.  Treatments often take time to kick in, and simply stabilizing disease can be a huge improvement.

     

    Talking about offing herself certainly sounds as though she is suicidal, unless she's always been the dramatic sort and frequently refers to things like that, but not seriously. You and your family need to be the judge of what's normal, what's not, but suicidal talk is a medical emergency and worthy of a 911 call, especially if you can't be there in person to assess the situation. At the least, her medical team should be made aware of how she is feeling, because there are enormous opportunities for her to feel better, function better, and enjoy life more.

     

    Scleroderma is not a *reason* to be unhappy but it is certainly an opportunity to learn that inflammation can affect the brain (causing depression), and that we all need to find new/more/better sources for support when we develop chronic illness. It's normal for the good-times friends to evaporate into thin air when something serious comes along, but they might be reacting more towards her attitude, than her illness.

     

    This forum would be a super place for her to hang out, once she has her feet on the ground, but we aren't professionals and can't do the heavy lifting that may be required first, such as perhaps medication or counseling, if they are necessary. Which, from this distance, it sort of sounds like. Sadly, depression can cause an even quicker demise than scleroderma, so it's nothing to ignore.

     

    Many of us are living with all sorts of varieties of scleroderma, and still enjoying happy marriages, delightful family members, and we have developed new friendships far and wide. But very often that has been with the assistance of our doctors, psychologists,and counselors at home at first, to help us learn how to turn lemons into lemonade and to develop the extra coping skills that all sorts of new frustrations and disappointments. With help, your mother can return to her cheery natural self, find fresh joy in her life, and develop new hobbies and friendships.

     

    Please be sure to get the maximum support resources for you and your family, too. It's a stress on everyone, and should never be underestimated.

     

    She's off to a great start, with a diagnosis, an expert, and a treatment. You can all get through this phase, I'm sure, but feel free to rely on all the professionals that you need to do so most successfully.

     

    :hug-group:

     


  6. Hi Kathy,

     

    Well, it's interesting that you won't be treated for Grave's right now.  If you have any doubt at all about your treatment plan, be sure to seek a second opinion from a board certified endocrinologist, because it sounds like you are experiencing uncomfortable (and treatable) symptoms.

     

    Also, please be sure to read up about "thyroid storm" which can occur with untreated and undertreated Graves disease. It's a very sudden, life threatening condition, so if you are aware of the symptoms you will know if/when to seek emergency care. It's also a good idea for people close to you to be aware of thyroid storm symptoms, in case you are feeling too grouchy or sleepy (from the storm) to react. It's not that it definitely would happen, just something to not take any chances with, either, especially since you are symptomatic but untreated at the moment.

     

    I'm delighted that your marriage is "back online".  That's the first time I've heard that phrase, so I got a belly laugh from it. It's amazing how a lighthearted sense of humor can help restore relationships (taking things too seriously can be such a downer), so clearly you already have that arrow in the quiver!

     

    :hug-group:


  7. Hello Pam,

     

    Welcome to Sclero Forums!  It's too bad you have such health issues, but wonderful that you are taking charge and tackling the issues head on. Getting the right medical team and becoming educated about your healthcare options can do wonders in improving our happiness and quality of life. 

     

    :hug-group:


  8. Hi Grey,

     

    Resunab is an interesting treatment in phase II clinical trials for cystic fibrosis, scleroderma, and dermatomyositis. They claim that it doesn't suppress the immune system, but rather that it is intended to bring the immune system back down to normal. It's an interesting idea. 

     

    It's usually not helpful to know if someone is in a clinical trial, because they may be receiving the placebo rather than the study drug, and even people on placebos can sometimes improve dramatically. I know how tempting it is to want to know more about such promising treatments, as soon as possible!  But we all have to wait it out. And thankfully, we have very delightful friends to wait it out with around here, don't we? 

     

    Also see: Scleroderma Treatments and Clinical Trials: Resunab

     

    :hug-group:


  9. Hi Avilamay,

     

    I somehow missed your first post to Sclero Forums and just found it now.  I'm very glad you joined us, but sorry that it's because you came down with scleroderma while you were pregnant. It must have been jarring to deal with such worrisome health issues while you were pregnant. I mean, there's never a good time to be sick, but there are worse times to be sick, and pregnancy is one of them as it creates a concern for both you and your baby. 

     

    Jo has answered your questions fully, as usual (isn't she just the tops?!), so I have little if anything to add. I would really urge that you consult one of the listed scleroderma experts, though. There are new breakthroughs all the time for scleroderma, and an expert can give you access to clinical trials and breakthroughs. 

     

    Have you figured out how to create a forum avatar yet?  We'd love to see what you'd choose for an avatar, and I look forward to hearing more from you. Here are some warm hugs for you, and a teddy bear hug for your baby.

     

    :hug-bear:

    :hug-group:


  10. Hi Wilson,

     

    Well, you raised an excellent question. Here's a comprehensive article, Proteinuria in Adults: A Diagnostic Approach by American Family Physician.

     

    As you can see, figuring out the cause is quite complicated but it needs to be taken step by step.  There are many things that can give it a false positive, so usually they are concerned about the overall pattern, rather than a single test.

     

    That article includes a flow chart, which is very helpful in sorting out how to proceed with the diagnosis. Scleroderma would be a very rare cause of kidney failure, of course, simply because it is so rare, whereas hypertension and diabetes would be far more common causes.  And, even people with scleroderma can acquire diabetes (etc.), so everything needs to be considered in the beginning.

     

    I hope that your doctors are able to sort it out soon for you!

     

    :hug-group:


  11. Hi Margaret,

     

    I'm sorry that you've had the worry over positive ANA, but I am glad that you were fortified enough to deal with it thanks to your participation in the forums all these years for Gareth. Imagine how much scarier it would all be, if you didn't know about false positives and the importance of symptoms when it comes to autoimmune disease. I hope things go well with the remainder of your tests, keep us posted.

     

    Jo, I shouldn't laugh over the horse doing the "hokey-cokey" on your foot but I really can't help chuckling from how you phrased it. Your lively sense of humor takes the sting out of so many things, doesn't it? 

     

    I'm also very grateful for the ISN and for the truly marvelous people, both those who help in a million different ways, and those who hang out here. It makes and keeps this a very special internet cubby hole, doesn't it?

     

    :hug-group:


  12. Hi Jo,

     

    I really miss Janet. I'm so sorry to hear this. She was a wonderful friend, faithful volunteer and loyal and ever-supportive Sclero Forums member. She was such a delight, and an amazing artist, leaving a beautiful legacy with her paintings that she donated to decorate some of our main website pages.

     

    I send my sympathy to all her other friends and family. We all feel your loss and your heartache.


  13. Hi All,

     

    We are just now starting to emerge from the dog days of summer, and a traditional time for our forums to be sort of on vacation. People are enjoying the last of summer, usually a bit of respite from heat, and are getting ready for the school year.

     

    It's also an excellent time for members to post any questions or issues that are on their mind, as your posts are likely to receive more time and attention from those of us who are not vacationing or readying for the school year.

     

    So, what questions do you have about living with scleroderma? Do you manage Raynaud's now, better than you used to?  Do you have any tips to share for dealing with fatigue? Whatever is on your mind, the dog days of summer are a perfect time to bring them forward!

     

    :hug-group:


  14. Quiltfairy, thank you for raising awareness of the talk to text feature, and how it may be very beneficial for scleroderma patients, or anyone who can't type or whose hands are impaired.

     

    It is a marvelous aid that can re-open the door to more involvement and communication, and the programs now are so much better than when they first launched!

     

    :hug-group:


  15. Hi Peter,

     

    It's delightful that you don't stress out over everything. Yes, non-tb mycobacteria can be very hard to treat.  I hope the hospital has some answers for you soon, to help guide your treatment decisions.

     

    :hug-group:


  16. Hi Peter,

     

    I'm sorry you are having additional complications. If I were you, I'd get a second opinion before jumping straight to steroids for muscle and joint pain, especially when it is of such recent onset. First, look at all your medications to see if that is a potential side effect. A common culprit for that is statins (cholesterol medications) or many other medications with muscle and joint pain as a side effect.

     

    It might also be the onset of fibromyalgia, which is very common with scleroderma. Or it could be that you are going through a stressful time, and not sleeping very well, and the fallout from that is aching from head to toe. In any event, since this is new, first look to medication side effects or any recent changes in your lifestyle (such as stress, or perhaps even stopping a regular exercise.)

     

    As Jo pointed out, its not the best idea to rush to steroids, especially with scleroderma. See Warnings for Steroids and Scleroderma, because steroids strongly increase the short term risk of developing scleroderma renal crisis (sudden kidney failure).

     

    So many other things could be tried first, such as improving sleep, stretching or exercising or warm pool classes, pain medications, massages, antidepressants, muscle relaxers, relaxation or meditation programs....why, the list goes on and on, and most of us use a combination of several if not many things to address muscle and joint pain.

     

    You've just had the whole stress of possible lung infection and difficult questions regarding possible treatments added to your plate. That's quite a stressor, too, and probably won't do anything to improve your relaxation and sleep (and thus, it may increase your joint and muscle discomfort.)

     

    I'm unable to take any steroids, even apart from scleroderma issues, and have managed widespread and chronic joint and muscle pain for decades without steroids. So, I know it's possible, even though steroids are certainly a very fast shortcut, in the long run, they can be quite troublesome, especially with scleroderma. Such as Jo, who has had to have two hips replaced just in the last year.

     

    I also count myself lucky to be unable to take steroids. I'm positive a single dose would have me hooked forever, as it would be a single source for relief (rather than the more complicated steps of sleep evaluations, plus other medications and many lifestyle changes) and I imagine it would be instant, as well. So then I'd spend my remaining days incurring kidney failure and joint replacements....of that, I have little doubt.

     

    Pay very close attention when you are being counseled regarding treatment, and take the time you need to make a proper decision. Some things truly are better off not treated, because sometimes the risks of treatment really are worse than the risks of the disease.  Especially as we age, we are more likely to encounter ailments that we are better off trying to just live with, as long as possible, rather than tackle them head-on.  But, you don't hear people talk of these issues much, for as a society we tend to go all-in for any treatment that exists.

     

    I myself have chosen to not have some things treated, yet have gone all-in for treatment of other things. It's helped me to ask my doctor, if it was them, or their loved one, would they attempt this treatment, under these same circumstances?  A surprising number of doctors would personally forego treatments that they are still obliged to offer to their patients.

     

    I'm sorry, I don't know why I'm going on and on about this.  Except to say, I appreciate that you will be faced with many decisions. Some may have easy answers, some not. Who knows, maybe you could even try the steroids at low dose for a few weeks, just to get the worst of the fires put out, while you work on getting other approaches ready, such as perhaps some good sleeping and pain meds, or enrolling in a warm pool class.  Just be aware to do your best, working with your doctors, to try to avoid relying on high dose or long term steroids for your condition -- if it's reasonable and possible, under the circumstances. 

     

    And please bear in mind, none of us, particularly me, are doctors, and we should not be guiding your medical decisions; rather, hopefully just giving some food for thought or to discuss with your experts.

     

    :hug-group:


  17. Hi Margaret,

     

    It would be a good idea to get Gareth in to see his gastroenterologist, to determine what is happening, and whether anything can be done about it.  Bowel incontinence can be caused by many things, including neuropathy which can occur with both Downs and scleroderma (and other illnesses, of course.)

     

    In the meantime, would it be possible for them to try to have him go to the bathroom on a regular basis, such as near the time he usually has issues?  For example, one or two timed breaks in the morning and/or afternoon, which might help it be less of such a surprise attack.

     

    I'm so sorry he's having more issues. Be sure to give him another big warm hug from me! :hug-bear:

     

    :hug-group:

     

     


  18. Renvy, this is difficult, because of course, we are not doctors and cannot diagnose or, certainly, treat anything simply via the internet. It is very important to consult a doctor who can tell you exactly what type of scleroderma your son has. It is most likely morphea, simply because that is most common in children, but it is worrisome that you say the skin over his whole body was thickening, which would more likely be systemic.

     

    We do not recommend any severe diet restrictions (such as eating only vegetables) for anyone with scleroderma, and particularly not for a young, growing child, because regardless of type of scleroderma, he will need a full selection of nutrients for his immune system to function properly.  I hope that you can find some medical advice and follow it.  Even if you can only find a local rheumatologist to help, or find the biopsy results, that would be a step forward.

     

    You may be able to figure out what type he most likely has, and thus what doctor to see, by looking at the videos on our main site about the various types of scleroderma. For example, morphea occurs in colored spots; linear causes an indented line of skin; and with systemic there is no color change, but simply a hardening that occurs on both sides of the body at once, usually starting in the fingertips and going upwards from there.

     

    If he has colored spots of hardened skin, then it is likely morphea; and that is the kind that UVA1 phototherapy is particularly good to treat.  See Scleroderma Videos now.

     

    Please remember, we are not doctors. This information is only to help you find the best local doctor to help care for your son.

     

    :hug-group:


  19. Hi Renvy,

     

    Please note that the resources that Jo pointed out to you are for systemic scleroderma and diet. There are no diet recommendations for morphea (or, the localized forms of scleroderma which include morphea, linear and en coup de sabre).

     

    We strongly suggest that you consult a dermatologist, because morphea is quite treatable, particularly with phototherapy (which is like a sun tanning booth).

     

    There's no food that will make a difference for morphea, other than the usual well-balanced diet that doesn't eliminate any major food groups (for good health in general) or whatever his doctor recommends in his particular situation.

     

    :hug-group:


  20. Hi Jo,

     

    Thank you for all the fabulous news research that you do for us, for the main site and the forums!  This little article is particularly interesting, because until now, the gold standard for diagnosis of pulmonary arterial hypertension has been a right heart catheterization, which is a very invasive procedure that carries some risk, especially in people with scleroderma, who are already quite sick.

     

    It's delightful to think that a blood test might be able to identify PAH. It could save so many people from an unnecessary procedure, and more quickly get those of us who are affected into an appropriate treatment plan. 

     

    I hope we see this particular research blossom into a larger study!

     

    :hug-group:


  21. Hi Nurse4Life,

     

    Did you look through our list of scleroderma experts for your daughter? In particular, there are two scleroderma centers in Pennsylvania that treat all ages and all type of scleroderma, so that might be a good place to start.

     

    Be sure to consider all aspects before pressing for a diagnosis.  A diagnosis of systemic scleroderma makes a person uninsurable for life, for things that you wouldn't think of normally for a child, such as life insurance (and, in some countries, health insurance.)  What matters the absolute most is that symptoms are treated as they arise. Also see our Diagnosis of Scleroderma resources, and note that the symptom requirements for diagnosis, such as tight skin and pulmonary fibrosis. Often, the disease can be strongly suspected but not yet proven for diagnostic purposes.  But, if I were you, I'd consult an expert.

     

    Even if it's too early for firm diagnosis, it's not too early to get a baseline and be regularly monitored.

     

    :hug-group:


  22. Hi Renvy,

     

    Welcome to Sclero forums.  I'm sorry your son has scleroderma and send my best wishes to you.

     

    As it happens, when children are affected by scleroderma, it is usually the localized form, such as morphea or linear scleroderma. These types usually affect only the skin (and not the internal organs, like the systemic type of scleroderma can.)

     

    There are no dietary treatments for scleroderma. Morphea is now considered to be very treatable, and UVA1 phototherapy is now usually the recommended first line of treatment.  See our resources on Morphea Scleroderma.  Often, morphea spots will fade on their own in three to five years, even without any treatment. However, when the lesions are over a joint, they can impair the growth of the limb, so it is important to get treatment.

     

    UVA1 is a concentrated form of light. It is a lot like a suntanning booth, and the equipment is often found in large dermatology offices.

     

    :hug-group:


  23. Hi Smb,

     

    I think it would be appropriate for you to schedule an office visit so that you can discuss the test results with your rheumatologist, and see whether they want to do additional baseline testing, or perhaps even begin treatment of some sort. 

     

    It's not always necessary to treat scleroderma, usually symptoms are just treated, especially in the beginning stages. But if you haven't had a full round of baseline testing (for heart, lungs, kidneys), now would probably be a good time to schedule it.

     

    Bear in mind that your symptoms are far more important than your blood work, as Jo said. If your rheumatologist isn't a listed scleroderma expert you may want to discuss with them a possible referral to a scleroderma center.

     

    :hug-group:

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