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1
General FAQs / Re: Bony Growths
« Last post by GinJones on August 24, 2017, 02:21:32 PM »
It's possible that they're what doctors call entheses, or calcification of ligaments where they attach to the bone (and the condition is called enthesopathy, which no one can pronounce!).

I have a lot of them (hip and foot, in particular), and in my case, they only hurt while they're forming or expanding. Otherwise, they don't hurt, but they do restrict the range of motion for the affiliated joint, since what should be rubbery (the ligament) has now essentially turned to stone (calcium).

I also have some calcifications that never hurt at all, but they're not in places like joints that move around and might irritate the calcification. Most particularly, I have one on the back of each hand, about an inch up from the wrist and about halfway across the hand, but a bit closer to the thumb. I have pictures of it somewhere, and I'm going to be on the road today and tomorrow, but when I get back I'll try to remember to upload a picture.

On the other hand, I'm not a doctor, and there are things that can appear like calcifications, but aren't. I've got what I thought was a calcification on the palm of my hand, but apparently it's something else, unrelated to XLH (and I'm blanking on the actual diagnosis). So definitely have it checked out by a doctor, just in case it's something else. A rheumatologist might be your best bet for this.
2
General FAQs / Bony Growths
« Last post by ShannonSharp on August 23, 2017, 05:11:37 PM »
I am 42 years old and over the past couple of years I have developed several bony growths on or around my joints.  These growths don't typically hurt on a normal day to day basis however occasionally I have a flare up of one and it is extremely sore for a day or so.  Has anyone else experienced anything like this??
3
General FAQs / Transition to adulthood
« Last post by GinJones on December 31, 2016, 09:39:43 PM »
The Network's Scientific Advisory Board member Maya Doyle is a speaker on a panel about transitioning patients from pediatric to adult care.
4
General FAQs / Laboratory tests: TRP
« Last post by GinJones on December 08, 2016, 12:03:45 AM »
If you see TRP  on a lab slip, it refers to Tubular Reabsorption of Phosphorus.

You can read more about it here: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88546
5
General FAQs / Laboratory tests: TRP
« Last post by GinJones on December 08, 2016, 12:03:00 AM »
If you see TRP on a lab results slip, it refers to Tubular Reabsorption of Phosphorus.

You can read more about it here: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88546
6
General FAQs / MOVED: Lupus
« Last post by GinJones on November 13, 2016, 02:37:29 PM »
7
It can't be done with a SINGLE click, but the instructions for getting messages by email are here: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=149.0

The instructions look complicated, but mostly it's just because there are so many different options. It only takes a minute or two to set it and then you can forget it. First, you choose one thread to follow, set your defaults for how to get the messages, and then you can click as many (or as few) other threads as you wish.

Another option, rather than getting messages by digest, is just to make a habit of checking in once a week or once a month or whatever frequency works for you. (Some people find it overwhelming to get messages every day or even every week, so this option is good for those who want to control when they want to be involved.) From the main page, scroll down to the bottom, and you'll see a link for "recent messages," which you can then scroll through.
8
Technical Support & Forum Feedback / Activating Notification for all Forum Adult Issues
« Last post by Tony N on September 11, 2016, 05:42:14 AM »
Is there a single pick mechanism or method to receive notification when any / all of the forums 19 adult subject categories contain new comments? This would be similar to the listserv daily digest email notifying members of said Forum activity.
Secondly; can a sticky or other on-going notice be placed on the listserv digest header that either recommends the user attempting to send any new message be referred to the Forum web address or can a hyperlink redirect to the Forum be included? There is apparently daily Forum activity that many of us have missed, for one reason or another, since we don't log on to the Forum everyday.
Thanks
9
General FAQs / MOVED: Patient stories
« Last post by GinJones on July 06, 2016, 01:35:10 PM »
This topic has been moved to Patient Advocacy.

http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=243.0
10
Welcome / For Medical Professionals
« Last post by GinJones on March 23, 2016, 06:12:02 PM »
Looking for the latest in hypophosphatemia research and news? We've got the links here, or you can sign up to receive the updates in a newsletter (once or twice a year) with the latest news and research citations: http://eepurl.com/bVz6O5

Recent news:

Phase 3 clinical trials (adults with XLH) have begun for KRN23, a recombinant human immunoglobulin G isotype 1 (IgG1) monoclonal antibody (mAb) that binds to and inhibits the activity of fibroblast growth factor 23 (FGF23). For more information (two separate trials): https://clinicaltrials.gov/ct2/show/NCT02526160?term=XLH&rank=1 or https://clinicaltrials.gov/ct2/show/NCT02537431?term=XLH&rank=2

A Phase 2 clinical trial has begun for adults with TIO, also for KRN23, a recombinant human immunoglobulin G isotype 1 (IgG1) monoclonal antibody (mAb) that binds to and inhibits the activity of fibroblast growth factor 23 (FGF23). https://clinicaltrials.gov/ct2/show/NCT02304367?term=TIO&rank=1

Phase 3 pediatric trials for the same treatment are expected later in 2016.


For basic information on hypophosphatemia, check out:

A CLINICIAN'S GUIDE TO X-LINKED HYPOPHOSPHATEMIA, by Thomas O. Carpenter, Erik A. Imel, Ingrid A. Holm, Suzanne M. Jan de Beur, and Karl L. Insogna (2011), available for download here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157040/

THERAPEUTIC MANAGEMENT OF HYPOPHOSPHATEMIC RICKETS FROM INFANCY TO ADULTHOOD. Linglart A1, Biosse-Duplan M, Briot K, Chaussain C, Esterle L, Guillaume-Czitrom S, Kamenicky P, Nevoux J, PriĆ© D, Rothenbuhler A, Wicart P, Harvengt P., Endocr Connect. 2014 Mar 14;3(1):R13-30. doi: 10.1530/EC-13-0103. Print 2014. PMID: 24550322   http://www.endocrineconnections.com/content/3/1/R13.full.pdf+html

HOW FIBROBLAST GROWTH FACTOR 23 WORKS. Liu S1, Quarles LD. J Am Soc Nephrol. 2007 Jun;18(6):1637-47. Epub 2007 May 9.  http://www.ncbi.nlm.nih.gov/pubmed/17494882

While developed in the context of nutritional rickets, the following may have applicability to understanding the x-rays of XLH patients: RADIOGRAPHIC SCORING METHOD FOR THE ASSESSMENT OF THE SEVERITY OF NUTRITIONAL RICKETS, Tom D Thacher, P.R. Fischer, John Pettifor, Juliana Olufunke Lawson, b.J. Manaster, J.C. Reading. https://www.researchgate.net/publication/12425132_Radiographic_scoring_method_for_the_assessment_of_the_severity_of_nutritional_rickets


Recent journal articles:

CONVENTIONAL THERAPY IN ADULTS WITH XLH IMPROVES DENTAL MANIFESTATIONS, BUT NOT ENTHESOPATHY, Commentary by Econs MJ., J Clin Endocrinol Metab. 2015 Oct;100(10):3622-4. doi: 10.1210/jc.2015-3229. PMID: 26439151 http://www.ncbi.nlm.nih.gov/pubmed/26439151

CONVENTIONAL THERAPY IN ADULTS WITH X-LINKED HYPOPHOSPHATEMIA: EFFECTS ON ENTHESOPATHY AND DENTAL DISEASE.  Connor J, Olear EA, Insogna KL, Katz L, Baker S, Kaur R, Simpson CA, Sterpka J, Dubrow R, Zhang JH, Carpenter TO.  J Clin Endocrinol Metab. 2015 Oct;100(10):3625-32. doi: 10.1210/JC.2015-2199. Epub 2015 Jul 15. PMID: 26176801 http://www.ncbi.nlm.nih.gov/pubmed/26176801

Other materials:

Poster from ENDO2015 with results from a burden of illness study. Alison Skrinar, PhD, Ayla Marshall, Javier San Martin, MD, and Melita Dvorak-Ewell, PhD.  X-Linked Hypophosphatemia (XLH) Impairs Skeletal Health Outcomes and Physical Function in Affected Adults.  http://www.ultragenyx.com/file.cfm/22/docs/KRN23%20-%20ENDO%20adult%20disease%20burden%20poster%20March%202015.pdf

Poster from ENDO2015 with results from a burden of illness study. Agnes Linglart, MD, PhD , Melita Dvorak-Ewell, PhD , Ayla Marshall , Javier San Martin, MD , and Alison Skrinar, PhD.  Impaired Mobility and Pain Significantly Impact the Quality of Life of Children with X-Linked Hypophosphemia (XLH). http://www.ultragenyx.com/file.cfm/22/docs/KRN23%20-%20ICCBH%20pediatric%20disease%20burden%20poster%20June%202015.pdf
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