Recent Posts

41

Technical Support & Forum Feedback / Re: Pregnancy and XLH

« Last post by GinJones on January 13, 2016, 07:25:41 PM »

Great suggestion -- I thought we had a Pregnancy/nursing topic, but we don't (or I can't find it either), so I'll add it now. Thanks!

Gin

42

Technical Support & Forum Feedback / Pregnancy and XLH

« Last post by DolceVita on January 13, 2016, 06:58:52 PM »

Hi, I don't know where to ask this so I figured this might be a good spot. This forum is already looking great and I know it's going to be so helpful for so many members, myself included. A topic I don't see covered yet in the list of topics is pregnancy. I wonder if perhaps in the future it might be helpful to add since I feel xlh poses a special set of challenges with questions and answers that arent met ( or even heard of)  on regular pregnancy forums. Getting advice from those who have experienced it would be wonderful. 

43

Welcome / For journalists

« Last post by GinJones on January 12, 2016, 09:52:38 PM »

If you're a journalist looking for information about XLH, we recommend:

1. Our website, xlhnetwork.org

2. Our facebook page, facebook.com/xlhnetwork

3. Our youtube channel: youtube.com/xlhnetworkincvideo

4. Our book, Weak Bones, Strong Wills, The Stories of XLH, available at all major online distributors, including Amazon: https://www.amazon.com/dp/B075MQMZXG/

5. The National Organization for Rare Diseases (NORD) page on familial hypophosphatemia, which is another name for XLH: http://rarediseases.org/rare-diseases/familial-hypophosphatemia/

6. For information about genetic transmission of dominant disorders: http://ghr.nlm.nih.gov/handbook/inheritance/inheritancepatterns

7. An overview of the condition, its causes, diagnosis and current standard of care (before burosumab), written by several of the top U.S. experts in XLH, and published in the Journal of Bone and Mineral Research, "A Clinician's Guide to X-Linked Hypophosphatemia" is here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157040/


If you would like to speak with a representative of the organization:

Executive Director: ExecutiveDirector@xlhnetwork.org
President: president@xlhnetwork.org
Treasurer: treasurer@xlhnetwork.org

44

Forum FAQ / Hints for using the Forum

« Last post by GinJones on January 07, 2016, 05:46:28 PM »

If you've found a shortcut or other useful feature of the forum, please share it with other members in this thread.

One that I like is the option way down at the bottom of the main page to see all new posts since my last visit here. That's in addition to the button at the top of each section (e.g., adult issues, pediatric issues) that will give you a list of the new posts within that section since your last visit.

45

Forum FAQ / How to embed a Youtube video

« Last post by GinJones on January 06, 2016, 12:02:20 AM »

Embedding a youtube video is simply achieved by clicking on the 'youtube' button above, then inserting your youtube link between the padding.

46

Welcome / Re: Video on Growing Up With XLH

« Last post by ForumAdmin on January 05, 2016, 10:58:49 PM »

Embedding a youtube video is simply achieved by clicking on the 'youtube' button above, then inserting your youtube link between the padding.

47

Technical Support & Forum Feedback / Beta testing comments

« Last post by GinJones on January 04, 2016, 05:04:55 PM »

If you run into any glitches in the early days of the forum, please let us know in this topic.

Thanks! (And apologies for the glitch.)

48

Welcome / XLH Dental brochures

« Last post by GinJones on January 04, 2016, 04:44:00 PM »

There are two brochures available for educating yourself and your dental care provider on the dental issues that XLHers face.

The first one is for yourself as a patient (or caretaker of a patient): http://xlhnetwork.org/files/4414/0348/7260/XLH-Dental-Information-for-Patients.pdf

The second is to print and give to your dental care provider (although please note that we are in the process of updating this flyer and will post here when it's ready): http://xlhnetwork.org/files/7814/0348/7183/XLH-Information-for-Dentists.pdf

49

Forum FAQ / Some topics you may have missed

« Last post by GinJones on January 03, 2016, 06:59:39 PM »

There are a few topics you may have skipped over in your initial review of the site, so we'd like to make sure you know about them.

Good News Corner Overwhelmed? Frustrated? There's nothing like good news once in a while. Of maybe you have some good news. Read or post to these sections. There's one in each of the adult and pediatric areas, so news about adults should go in the adult area http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=52.0
 and news about kids should go in the pediatric area http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=74.0 . We all need to know that our lives are not only about their challenges.

Coping strategies Do you have something that helps you cope? It might be something physical (like gadgets) or something mental or spiritual. Share it in these sections. There's one in each of the adult and pediatric areas, so suggestions for adults should go in the adult area
http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=75.0  and suggestions for kids should go in the pediatric area http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=76.0

Global community. This is where non-English speaking members can relax and chat with those who share your language. Please note that in the rest of the forum, we request that you post in English, whether it's your own stab at the language (we expect all members to treat others with respect, so don't worry if your English isn't fluent), or by translating your comment/question through something like Google translate before posting.  Adults should go to http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=66.0 and kids should go to
http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=67.0

50

Forum FAQ / How and where to post

« Last post by GinJones on January 03, 2016, 06:46:35 PM »

One of the goals of the forum is to keep material somewhat organized for easy future reference. Accordingly, it's important to stay on topic. For example, a question/comment about root canals belongs in the dental area, not the kidneys area.

Please take some time to familiarize yourself with the various areas of the forum before you start posting, so you can find the most appropriate place to make your comment or ask your question. Then, when you're ready to post, please check to see if there's already a discussion on the subject you want to talk about. If so, please add your comment or question to that existing discussion. If you can't find a relevant discussion, feel free to start one in the appropriate area.

We understand that sometimes a topic may not be clearly defined (e.g., perhaps a question about root canals also involves pain management), so do your best to figure out where your question/comment fits, and if a moderator thinks it belongs somewhere else, it will be moved to another topic or to a new thread of its own. Don't stress about it too much, but keep in mind that our moderators are volunteers, so don't make their job harder than it has to be!



Take your time exploring your areas of interest. We’ll love to hear from you.