Rare Disease

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    Being

    Notice how the mind loves to try to convince you that you should be doing more. No matter how far you go or how much you accomplish, it will insist there is more you need to do. Even when you are on vacation and simply resting, the mind will tell you, you are wasting your time. But life is not about getting anywhere. There is no destination or finish line. If you let your mind convince you of these things, you will constantly think you are not good enough. Can you relate to this? How do you ignore the constant pressures that your mind tries to attack you with?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia #ComplexRegionalPainSyndrome

    Question
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    What’s your easiest migraine trigger to avoid?

    Most of us who live with migraine have specific triggers that almost always spur an attack on or make an existing episode worse. I sometimes call those stimuli “insta-migraine.”

    While some triggers are super hard to avoid (like fluorescent lighting), others are easier. So today I’m curious about the simple ones. Mine is red wine. I know the minute I take a sip — or honestly, even smell it — I am going to flare and that makes it so easy for me to avoid. Plenty of other alcoholic beverages to enjoy pain-free!

    What about you?

    #mightywithmigraine #ChronicPain #ChronicIllness #Migraine #Fibromyalgia #Endometriosis #RareDisease #Disability

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    What does your week have in store for you?

    We’re wrapping up November, heading into December, and kicking off a new week today. So we have to ask, what’s your week looking like? Any big plans, appointments, or milestones on the horizon? Just trying to survive one day at a time? (Us too.)

    Let’s encourage each other in the comments below.

    #MightyMinute #CheckInWithMe #MentalHealth #ChronicPain #ChronicIllness #Disability #RareDisease #CheerMeOn #Parenting

    Post

    Fighting VCP With Education

    It happens more than we think, having a family member go in for a routine procedure and finding out that they have an illness….but sometimes it takes a few months or even years for professionals to diagnose a disease or illness. This is often the case for families, that carry the VCP gene.

    VCP is called Valosin Containing Protein (VCP or p97), which is a protein disorder that affects many body functions and systems. ‘VCP is a rare genetic disease, which can affect a patient’s muscles, bones and brain,” (CureVCP.com) This disease can run in families, with a 50/50 chance of children also having this disease.

    VCP is a terrifying disease, because it can lead to so many or multiple very difficult disorders, some of which do not even have a cure. Some of the disorders are: Paget’s disease of bone, frontrotemperal dementia, inclusion body myopathy, amyotrophic lateral sclerosis (ALS), Parkinsonism, hereditary spastic paraplegia, Charcot-Marie-Tooth disease, cardiomyopathy, cataracts, and neuropathy. Although some of the disorders do have medicine to slow their progress, others do not have any path forward.

    VCP disease is medically known as multisystem proteinopathy (MSP1), since it often affects so much of the body. This makes diagnosing a client with VCP just that much more complex and challenging to identify. In some cases, clients will have no idea that this disease runs in their family so when they start experiencing symptoms it is hard to identify and navigate getting the proper diagnosis, especially with a autosomal dominant, neuromuscular disease, such as this.

    Symptoms may appear as muscle weakening occurs or when muscle responses do not continue with their normal functioning. Examples of VCP might be someone trying to eat out of their soup bowl but instead pushing the bowl away from their reach, accidently, on their own or someone trying to sit down but accidently clapping their hands. Most of the early symptoms may be laughed off as someone being “tired,” “forgetful,” or “aging,” but as symptoms continue to worsen, individuals may need family and/or caregiving support around the clock.

    Most individuals, with VSP, have lived diverse lives and they can be of all or any nationalities and socioeconomic statuses. It is hard watching someone, who may have been a professor or doctor become someone, who needs help with bathing, getting dressed, and even to eat.

    This illness is so important to know about because there is so little information on it, at all. This makes it so much more challenging, when someone starts experiencing symptoms because professionals like to compartmentalize it into more commonly-known diseases. Although VCP does not affect many, health care professionals will most likely come into contact with 1 or 2 VSP patients in their medical careers. With so many VCP clients losing their ability to talk, write, and sometimes even walk, it is just that much more important for us to be able to advocate for them. The most important thing we can do is spread information and empower individuals, who may be faced with learning whether or not they are a carrier of their parents’ same disease. The more we discuss it and the more we share, the more likely it is for medical professionals to consider doing more research to put a stop to VCP, or at least to slow it down. The best we can do is to continue fighting and helping each individual, that has, is facing, or will face, this challenging disease, use their abilities as lost as their possibly can.

    www.curevcp.org

    #RareDisease

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    Reflection

    Remember that thoughts and emotions are simply visitors. They come and go. But if we fight them and wish they shouldn't be there, they stick around longer. Notice that thoughts are simply flying around in your head, and notice how much attention you give them. When you can recognize that your thoughts are not you, nor are they a reflection of you, you can begin to free yourself from them. Does anyone practice anything like this?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia #ComplexRegionalPainSyndrome

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    I can't remember if I shared this but it is something I got for myself to keep by my bed and remind myself that I should aim to be a 🌻 sunflower

    It says I want to be a sunflower so that even on the darkest days I will stand tall and find the sunshine. Best motto ever!

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #MentalHealth #MemoryLoss #Psoriasis #bedbound #RareDisease #SuicidalThoughts

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    What’s the hardest part about being a caregiver during the holidays?

    Being a caregiver is a rewarding (but sometimes tough) role, and it can be extra challenging especially during the holiday season when the external demands are heightened.

    What do you find to be the hardest part about being a caregiver this time of year? What tips do you have for other caregivers who are also navigating the holiday season?

    💜 P.S. We hope you can take a little time for yourself to rest and recharge.

    #Caregiving #Caregivers #MentalHealth #Depression #Anxiety #CheckInWithMe #Fibromyalgia #Migraine #alzheimers #Cancer #MultipleSclerosis #Disability #ChronicPain #ChronicIllness #RareDisease