Hi Jak – I am a physical therapist in the US and one of my agrees of specialty is treating patients with EDS and hypermobility – I am actually good friends with Dr. Alan Pocinki, as you said, he is a great resource – but so is your blog! I really enjoy your honest discussion about your symptoms and what you have tried that works, and what doesn’t. If you would ever like to discuss more of the exercise and non-pharmacological pain management options that I have had success with in treating my patients, please feel free to send me an email. Congrats on such a well written and informative blog! I plan to refer patients to it as a resource – thank you.
Sara Squires Davis, PT, DPT
Thanks so much for the kind comments 🙂 I’m delighted you think my blog will help other people with EDS – I try to be realistic, even if that comes across as being negative sometimes! Having 4 illnesses is a struggle but I think it’s important to explain what it’s *really* like so that other people who are battling don’t think they are just weak or not coping well.
Love your sense of humor, your strength, your honesty! Thanks for all the info!
What a lovely comment Ana-Carolina 🙂 Really pleased you’re finding the blog useful. Jak x
I have been looking at various posts on your website over the last few weeks, and i have found them to be so helpful and informative. Congrats to you for this site and for managing your health probs so well.
I have recently been seeing Dr Seneviratne in London who thinks i have a mast cell disorder (i already have Pots and EDS), i am feeling very overwhelmed and baffled by everything i read about it and am just looking for some pointers(a 30 mins appt with Dr S is never long enough for all my questions!), would i be able to email you privately? I think other sufferers are the experts on these conditions half the time.
Just a quick note as I’m out tonight, but I’ll email you tomorrow. I’m no expert, but will try to answer any questions you have.
Thanks SO much for your excellent blog and for the (precious!) time and energy you put into writing it. I’m finding it really helpful.
I just tried to click the link for the ‘Itch-Away’ shampoo but it came up with ‘Link not found’. I searched the company’s website and the closest product is this http://www.greenpeople.co.uk/irritated-scalp-shampoo-200ml … do you think it could be the same product?
Really appreciate you letting me know the shampoo link doesn’t work. They’ve changed it to this http://www.greenpeople.co.uk/organic-homme-10-itch-away-shampoo-125ml so I’ll alter it.
Glad you like the blog and thanks for taking the time to comment 🙂
You are amazing with your clarity , strength and tenacity 😀😄. Plus honesty! What a breath of fresh air . I have Pots .EDS . MCAD and I’m needing more urgent spinal surgery so on the crest of necessary big fund raiser as only USA team will do necessary next procedure .im mostly too ill to use computers, therefore isolated from possible support. It’s a terrifying place to be so I was hugely inspired by your honest ( not at all negative) blog . Thank you
Thanks for taking the time and energy to write such a lovely comment Catherine and I’m so glad you like my blog 🙂 So sorry to hear about your isolation, I struggled to use a computer for many years so I understand how hard it can be. Great that you found Dr K though and he has helped you 🙂 I hope you manage to get your surgery. Jak x
Please let me inform you about some news from our histamine & mast cell group SIGHI:
1) New Cookbook:
The SIGHI cookbook “Mast-Cell-Friendly and Low-Histamine Cooking” has become very popular in the German speaking countries. In addition to histamine, histamine liberators (liberators of mast cell mediators) are avoided as well.
We get very positive feedbacks (e.g. http://www.amazon.de/dp/3863867483).
Now, there is also an English translation available:
2) New website mastzellaktivierung.info:
The website mastzellaktivierung.info is new and therefore, the EN translations are still incomplete. However, this will hopefully become better soon. Our food list and some other content is already available in EN:
I would be very grateful if you could check this out and let your readers know. Many thanks!
H. Lamprecht, Swiss Interest Group Histamine Intolerance (SIGHI)
Thanks so much for sharing this information with me. Apologies for not replying sooner – my computer broke and has been away for repair. The cookbook looks great and must have taken a lot of hard work to put together. I will definitely publicize this on my blog and put a link here on the resources page.
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