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Canadian XLH Network

The Canadian XLH Network is a non-profit organization dedicated to bringing Canadians with the rare disease X-Linked Hypophosphatemia together, to build a community, educate, and advocate for the best possible care. Our vision is to see readily available and easily accessible treatment; well-managed and consistent care; and positive mental-health and high quality of life for all Canadians impacted by XLH.
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Canadian XLH Network
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XLH Resources – canadianxlhnetwork.org
1. Get moving: a brisk walk or even 10 minutes of stretching improves blood flow and boosts energy • 2. Healthy eating: increase fruit, vegetable and iron rich foods and reduce high sugar and processed foods • 3. Eat regularly: avoid skipping meals and avoid overeating to help keep your blood sugar from dipping and spiking • 4. Be careful with caffeine: excess caffeine can actually contribute to tiredness, try cutting it out for a few weeks to see how your energy levels adjust • 5. Try to get enough sleep: focus on a regular sleep schedule, limiting caffeine and blue-light screen time later in the day Avoid Overeating, Get Enough Sleep, Enough Sleep, Iron Rich Foods, Iron Rich, Peer Support, Sleep Schedule, People Living, First Names
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Avoid Overeating
Get Enough Sleep
Enough Sleep
Iron Rich Foods
Iron Rich
Peer Support
Sleep Schedule
People Living
First Names
Top 5 Tips on How to Combat Fatigue in XLH
1. Get moving: a brisk walk or even 10 minutes of stretching improves blood flow and boosts energy • 2. Healthy eating: increase fruit, vegetable and iron rich foods and reduce high sugar and processed foods • 3. Eat regularly: avoid skipping meals and avoid overeating to help keep your blood sugar from dipping and spiking • 4. Be careful with caffeine: excess caffeine can actually contribute to tiredness, try cutting it out for a few weeks to see how your energy levels adjust • 5. Try to get enough sleep: focus on a regular sleep schedule, limiting caffeine and blue-light screen time later in the day
Here are our top 5 tips for encouraging children on conventional therapy to take their oral medications - plus a few bonus ideas! Do you have any other hot tips that we didn’t mention? What’s your favourite tip? Comment below! #XLHstrong #XLH #XLHCanada #showyourrare #CanadianXLHNetwork #RareDiseaseAwareness #FGF23 #NeedleNinja #FactFriday #StrongerTogether #xlhstrong #Zebra #ZebraStrong #xlinkedhypophosphatemia #xlinkedhypophasphatemicrickets #VitaminDResistantRickets #VDRR #PhexGene #wellness #HotTip
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Tips for Encourage your Child to Take Their Oral Medications
Here are our top 5 tips for encouraging children on conventional therapy to take their oral medications - plus a few bonus ideas! Do you have any other hot tips that we didn’t mention? What’s your favourite tip? Comment below! #XLHstrong #XLH #XLHCanada #showyourrare #CanadianXLHNetwork #RareDiseaseAwareness #FGF23 #NeedleNinja #FactFriday #StrongerTogether #xlhstrong #Zebra #ZebraStrong #xlinkedhypophosphatemia #xlinkedhypophasphatemicrickets #VitaminDResistantRickets #VDRR #PhexGene #wellness #HotTip
The gene responsible for XLH is located on the X chromosome, and having only one mutated copy of the gene is enough to cause the condition in both males and females. A female with XLH has a 50% chance of passing XLH to each of her children. A male with XLH will pass XLH to all of his daughters, but to none of his sons. In some cases, XLH is not inherited from a parent, but occurs in a person with no family history of XLH, due to a spontaneous mutation in the PHEX gene. #XLH X Chromosome, No Family, Family History, No Response, Conditioner
X Chromosome
No Family
Family History
No Response
Conditioner
XLH Fact: Inheritance
The gene responsible for XLH is located on the X chromosome, and having only one mutated copy of the gene is enough to cause the condition in both males and females. A female with XLH has a 50% chance of passing XLH to each of her children. A male with XLH will pass XLH to all of his daughters, but to none of his sons. In some cases, XLH is not inherited from a parent, but occurs in a person with no family history of XLH, due to a spontaneous mutation in the PHEX gene. #XLH
Caring for your child with XLH: Finding out your child has XLH, whether inherited or spontaneous can feel overwhelming. Most families never get the opportunity to meet others who have XLH, creating a sense of isolation and confusion when attempting to educate your child, and help them get through the obstacles they face along the way. www.canadianxlhnetwork.org When it comes to teaching the importance of treatment, involving your child with his or her care as early as possible is helpful in building that knowledge and confidence. Encouraging your child to ask questions during doctor's appointments will help them get used to interacting with their care providers, and make that eventual transition from child to adult care. Whether they are having regular needles, surgeries, tooth abs
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Caring for Children with XLH
Caring for your child with XLH: Finding out your child has XLH, whether inherited or spontaneous can feel overwhelming. Most families never get the opportunity to meet others who have XLH, creating a sense of isolation and confusion when attempting to educate your child, and help them get through the obstacles they face along the way. www.canadianxlhnetwork.org When it comes to teaching the importance of treatment, involving your child with his or her care as early as possible is helpful in building that knowledge and confidence. Encouraging your child to ask questions during doctor's appointments will help them get used to interacting with their care providers, and make that eventual transition from child to adult care. Whether they are having regular needles, surgeries, tooth abs
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Facts About XLH
The Canadian XLH Network is a non-profit organization dedicated to bringing Canadians with the rare disease X-Linked Hypophosphatemia together, to build a community, educate, and advocate for the best possible care. Our vision is to see readily available and easily accessible treatment; well-managed and consistent care; and positive mental-health and high quality of life for all Canadians impacted by XLH.