Why are we scared from taking cortisone as a treatment? 1. It has numerous side effects, such as osteoporosis, stomach issues, and more. 2. Prolonged use of high doses can lead to secondary adrenal insufficiency, where the body stops producing cortisol naturally because it becomes dependent on the external supply of cortisone from medications. Always consult a doctor and follow their guidance, especially when tapering off cortisone at the end of the treatment. #aldhope #Cortisone
About us
ALD Hope is a non-profit organization dedicated to providing support and resources for individuals and families affected by Adrenoleukodystrophy (ALD) and Addison's disease. Our mission is to raise awareness of these rare and often misunderstood conditions, and to provide a wide range of services to improve the lives of those living with them.
- Website
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www.aldhope.org
External link for ALD Hope
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- Oakville, ON
- Type
- Nonprofit
- Founded
- 2023
Locations
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Primary
Oakville, ON, CA
Employees at ALD Hope
Updates
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The difference between cortisone and cortisol is that cortisone is the inactive form of cortisol. Medications labeled as cortisone enter the body in this inactive state and are converted to the active form, cortisol, after interacting with certain proteins produced by the liver, such as cortisol-binding globulin (CBG) and albumin. Once converted, cortisol is then distributed to the organs that require it for various functions. #aldhope #cortisol #cortisone
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الفرق بين الكورتيزون والكورتيزول الكورتيزون هو الحالة الغير فعالة أو غير نشطة من الكورتيزول لذلك جميع الأدوية يطلق عليها كورتيزون تدخل الجسم في حالة غير نشطة حتي تتفاعل مع بعض البروتينات التي يفرزها الكبد وهي cortisol binding globulin (CBG) و albumin وعندها تتحول إلي الحالة الفعالة التي يطلق عليها كورتيزول وتتوزع علي أعضاء الجسم المستفادة من الكورتيزول.#aldhope #cortisol #cortisone
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Does your child avoid activities? It might be time to check his health. #aldhope #adrenalinsufficiency #addisonsdisease #adrenoleukodystrophy #raredisease
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ممكن يكون سبب عدم قدرة الطفل بالقيام بأي أنشطة وعدم تفوقه الدراسي مشكلة صحية. #aldhope #قصور_كظري #مرض_نادر #طفل
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ALD Hope reposted this
🎨 Calling all budding JUNIOR ARTISTS from the rare disease community 🎨 💫 PLEASE SHARE WITH YOUR RARE FRIENDS AND COLLEAGUES 💫 The March 2025 issue of the EMWA Medical Writing journal will be dedicated to rare diseases. I'm so delighted to have been invited to guest edit this edition, along with my colleague Sarah Milner. BUT....we are both writers and not artists, so we thought that it would be a great idea to invite our junior members of the global rare disease community to design our front cover. The competition is open to all individuals with a rare disease, or their siblings (16 years or younger). The design can be anything to do with rare diseases. Four designs will be chosen for the front cover. The artist of each chosen design displayed on the front cover will win 100 euros (or equivalent currency). Other designs will be displayed throughout the journal. If we receive more entries than we can fit in the journal, then we plan to display them in an online gallery for everyone to see your efforts. DEADLINE FOR SUBMISSION: 17 NOVEMBER 2024 Scan your designs and send to: mew@emwa.org AND editor@emwa.org Format: First name only, age, country, rare disease. TIFF, or JPEG images should be submitted at a minimum input scanning resolution of 300 dpi for full colour, 350–400 dpi for half tones, 800 dpi for simple line art, and 1200 dpi for fine line illustrations. MPS Society UK, here for those with rare diseases Bob Stevens BDSRA Foundation Batten Disease Support & Research Association (BDSRA) Australia Batten Disease Family Association Rare Diseases South Africa Rare Patient Voice RARE DISEASES INTERNATIONAL Kelly du Plessis Chris Hendriksz Neil Spooner Ineka Whiteman PhD Rare Disease Day EURORDIS-Rare Diseases Europe Nev Ross Riham Badawy Effie Parks MediPaCe PiCC United Williams Syndrome Association Pitt Hopkins UK EHC - European Haemophilia Consortium Duchenne UK CHAMP1 Research Foundation National PKU Alliance Nngwe - One Life Matters #raredisease #competition #artists #medcomms
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Simple description of X-linked adrenoleukodystrophy (ALD) and adrenal insufficiency and its types. #aldhope #adrenoleukodystrophy #adrenalinsufficiency #addisonsdisease #raredisease #aldnewbornscreeningsaveslives #savetheboys
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Schools should be informed about adrenal insufficiency and trained on how to support students with this condition. It's essential for staff to understand the importance of keeping hydrocortisone medication and injections readily available at school, ensuring they can respond swiftly in case of an adrenal crisis to potentially save the student’s life. Symptoms of an adrenal crisis include: 1. Loss of consciousness. 2. Inability to communicate. 3. Fainting (coma). 4. Persistent vomiting. 5. Ongoing diarrhea. 6. Lethargy with headache or severe abdominal pain. Additional symptoms that may appear during an adrenal crisis: 1. Severe headache. 2. Intense abdominal pain. 3. Extreme fatigue or daytime sleeping. 4. Temporary memory loss for familiar information, such as home address or phone number. 5. Feeling chilly, especially in the hands and feet. 6. Joint and muscle pain. 7. Muscle weakness or difficulty grasping objects. 8. Dizziness or brief blackout when standing. 9. Nausea. #Aldhope #adrenalinsufficiency #addisonsdisease #school #rarediseasekid #awareness #AwarenessMatters #AwarenessSavesLives