reds4veds

I'm a little late but here the week 3

Day 11 – A Practical Tip That Helps

My walking stick for everyday. Don’t miss a meal and stay hydrated. It makes the symptoms worse, even if it’s hard to remember. A structure and a gourd are my best allies to remember them.

Day 12 – Thank a Healthcare Professional

My physical therapist, without whom I would be in the most complete pain

Day 13 – Living With Comorbidities

For me, it’s autism, asthma, orthostatic hypotension, and chronic urticaria.

Day 14 – Something I’ve Learned From Research

It's the Road to 2026 who gave me hope because right now, it’s up to the patient to assemble a medical team as best they can. From now on, he will have a real medical protocol for monitoring EDS and HSD. It’s no longer the specialist doctor who will impose on us when he wants to see us or not. There will be a real framework.

Day 15 – Wear #reds4veds

Day 16 – My Type, My Experience

I want that people understand hEDS and HSD are a chronic illness with more consequences that just hypermobility. Even at 21, I am learning new things about my body. It's not because Just because we don’t have terminal cancer (sorry, friends, but the able-bodied often use you to compare us) doesn’t mean that our experiences and problems don’t matter.

Day 17 – A Message to Someone Newly Diagnosed

Your experience matter. Your feelings and sensations matter. We must accompany you to understand your body, not reject you. Chronic illness will teach you more about life and your loved ones than a "normal" person would know.

Day 18 – What Rest Means to Me Now

I know it’s necessary now and I don’t reject it but we still have a complicated relationship. I try to understand it and adapt the rest to my life.

Day 19 – One Boundary I’ve Learned to Set

It's hard to set boundary.

Have a good week, see you Sunday

Wolf

#Autism #EhlersDanlosSyndrome #ChronicIllness #Disability

Day 16 – Wear #reds4veds

What is vEDS ?

vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. vEDS can cause symptoms in many different areas of the body, so people with vEDS may require multiple providers in different specialties to manage their care.

(source : Elhers Danlos Society)

I do not have this type of EDS but it is related to my previous posts. EDS and HSD are more than hyperlaxity otherwise it would not be diseases so the prejudice that this would only be hyperlaxity should go to be buried. They have enormous consequences for our health that can go far. Fortunately, for vEDS there is a genetic test but it would have been impossible without science without research support. So do not hesitate to share or take a picture of you wearing a red outfit and with the hashtag #REDS4VEDS.

Thank you all and have a good day.

#EhlersDanlosSyndrome #MightyTogether