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Stem Cells, etc….......... Lots to talk about - maybe I should start about 5 topics :)
Posted: 03 January 2013 08:16 PM   [ Ignore ]  
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Dr. Diana,

I am new here but I wonder if you ever speak or do research into stem cell treatments. I came across information on Dr. Yamanaka who just won the Nobel Prize for being able to allow adults to generate more of their own stem cells using their own skin cells, eliminating the need for embyos. He claims that this may lead to a cure for many diseases such as MS, Parkinson’s, Sickle Cell, etc. Some of his research claims that he regerated heart connective tissue! Connective tissue being the key phrase here ! Do you think this could ever lead to treatment for EDSers, vascular and otherwise?

A little background on who I am. I do not have EDS but my 18 yr old daughter does. Life has been a real struggle the past couple of years. She has had 4 surgeries in the past two years, including a C1/C2 fusion, two laterget’s on her shoulders and now feels she needs a thoracic and/or lumbar fusion. She tells me it feels as if her back is just going to snap. I want her to excersize but she is afraid to move too much as one doc told her too much instability in her spine could cause paralysis. 

She has so many issues, CFS, very unstable joints, Fibro, POTS, endometriosis we believe, panic attacks and now with her back so bad most of her days are spent in her recliner. She has a beautiful opera voice and received a large scholarship at a prestigious conservatory but is now home on medical leave. Her ribs are subluxing and she cannot sing anymore without there being too much pain, even breathing is painful she says.

Do you think surgeries weaking the body? It seems as soon as she heals from one we’re on to another. I also wonder with her being on pain meds could this be depleting her vitamin levels and causing more instability? 

I know I got way off topic, sorry. Wonder if you could give me your thoughts on all this. I know it’s alot!

Thank you - love your videos. Humorous and enlightening - can’t beat that!

Jackie

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Posted: 04 January 2013 09:41 AM   [ Ignore ]   [ # 1 ]  
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Hi Jackie, From what I can tell, the jury is still out on stem cell treatment. One of our moderators paid the $40K or so to do it, but she hasn’t reported anything positive yet. My gut feeling on this (which is ALL it is, based on my reading), is that treatment may be premature for us. I think some doctors are just taking a stab in the dark—I don’t believe they have identified our genetic defects for most of us. Can stem cell therapy fix all genetic defects? I doubt it. I need more evidence that the doctors know what they are targeting, and how it would work (EXACTLY) for us. I DO believe that injury (including surgery) makes us take a HUGE step backwards, dang it. I, too, had to stop singing, but just this year noticed that I can at least sing in the car and shower again! I was so affected, that not only could I not sing, it was hard for me to talk. I spoke VERY softly to avoid a valsalva response (and it is evident from my earlier videos). I look forward to sharing what I’ve learned about us, and how I’m attacking our issues directly. It takes a few steps (and in the right order), but I think it will be successful for most of us. Hang in, my friend.

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Posted: 05 January 2013 07:04 PM   [ Ignore ]   [ # 2 ]  
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Thanks for your input. I thought they identified the gene for all types of eds except type 3, and I’ve read something about the TNXB family if genes being suspected. I’ve heard someone with this type of EDS may NOT have inherited it, and sometimes I wonder if that’s the case with my daughter as I do not have it and am not sure that her biologicAl father did. I’ve read that posssibly it could be caused from a Folate or B vitamin deficiency surfing pregnancy

I also see on your site that you give consultations and wasn’t able to open that link. I’d love for my daughter to talk to you as I think she needs input on taking her vitamins and Zyrtec, etc. or just getting to know what works best for her to get her feeling somewhat better and not just going after surgeries.

ok that was rough…....got a new kindle and it takes getting used to typing on this thing!!!! it wants to correct your spelling even when you don’t want it to:)

jackie

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Posted: 06 January 2013 08:16 AM   [ Ignore ]   [ # 3 ]  
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Ok, I was able to open the consultation form now that I’m back on my computer.

Thanks,
Jackie

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Posted: 07 January 2013 05:04 PM   [ Ignore ]   [ # 4 ]  
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jackie - 05 January 2013 07:04 PM

Thanks for your input. I thought they identified the gene for all types of eds except type 3, and I’ve read something about the TNXB family if genes being suspected. I’ve heard someone with this type of EDS may NOT have inherited it, and sometimes I wonder if that’s the case with my daughter as I do not have it and am not sure that her biologicAl father did. I’ve read that posssibly it could be caused from a Folate or B vitamin deficiency surfing pregnancy

I also see on your site that you give consultations and wasn’t able to open that link. I’d love for my daughter to talk to you as I think she needs input on taking her vitamins and Zyrtec, etc. or just getting to know what works best for her to get her feeling somewhat better and not just going after surgeries.

ok that was rough…....got a new kindle and it takes getting used to typing on this thing!!!! it wants to correct your spelling even when you don’t want it to:)

jackie

Hi Jackie, WOW!! Do you know where you heard that some TNXB folks may NOT be genetic? That would be INCREDIBLY helpful!! I have no doubt that B vitamin problems affect many of us in utero, but Dr. Bravo (in Chili) is the only doctor I know who talks of this, and for him it’s basically a “hunch”. My kids and I have the classic form, but about 50% of classic EDSers don’t show the typical genetic defect, so I don’t think it is only the hypermobile folks…  Consultations are on hold for now because my team and I had to all sign confidentiality agreements. After I get out some of this research, I’ll start it up again, OK?  AUTOCORRECT! There is a funny site damnyouautocorrect.com that you may enjoy… HY-STER-I-CAL! Big hug…

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Posted: 08 January 2013 07:31 PM   [ Ignore ]   [ # 5 ]  
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hi Dr. Driscoll,

I’m not sure where I read about the some of this being not genetic but I will dig through my archives to look for it. I just remember it being said that they estimate about 3 percent of type 3 being not genetic. then I remember seeing a study where the TNXB folks showed that the parents did not have it and/or their children were not affected but most of the siblungs in the family were, or something to that effect. so that tells me it something going on in utero with that particular mother. when I bring this up at doc appointments many dismiss it as though it doesn’t matter, but I feel it does because I would imagine that the manner in which one is affected would determine how one is treated if and when science finds treatment for this. God willing. I had one doc tell me he has heard of this but thinks that they will link it to genetics within the next five years.

So I just think it would be interesting to have my daughter tested for this TNXB gene but we’ve been so over whelmed with all our other fun things like screws in shoulders and spinal fusions:) And I’m not quite sure how to go about it or how much it costs so I may be way off base about being able to do it. I was shocked at the cost you mentioned for stem cell treatment! who’s got that kind of money laying around! I suppose that’s what loans are for;)

so I’ll try to dig up that info for you and in the mean time checkout that auto correct website. in between medical treatments, laughter is what we use around here to stay sane, or at least I think we’re all still sane:)

thanks!
Jackie

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Posted: 09 January 2013 10:57 AM   [ Ignore ]   [ # 6 ]  
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Thanks so much for checking on that, Jackie. If some of us experience problems that are not genetic, we may have more treatment options! Always a good thing! I’m trying so hard to avoid most ANY surgery because of poor healing, osteoporosis, PAIN and any trauma seems to set me back. My shoulder is pretty bad now—I wear a posture brace about half of the day, and when sitting, prop up my arm on something, so that it is not just hanging… (hence the duct tape!). I’m with you on the humor thing. Sanity? That can be fleeting… ha. Hang in…;)

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