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I Won’t Let My CIDP Diagnosis Take Away My Dreams

mcoye1993

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I Won’t Let My CIDP Diagnosis Take Away My Dreams

Think about your senior year of high school. Does prom come to mind? At the start of my senior year, 17-year-old me highly anticipated prom night. When I went dress shopping, I had my best friend with me — along with my physical and occupational therapists — because putting on dresses was my “therapy” that [...]

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Advice for Adults Seeking a Rare Disease Diagnosis

The Mighty Staff

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Advice for Adults Seeking a Rare Disease Diagnosis

NewThe journey to receiving a rare disease diagnosis later in life, also known as a late-onset diagnosis, can be a bumpy one (and that’s putting it nicely). To help you navigate this road, we asked our rare community to share their advice for others who are similarly searching for answers. Here’s some advice that’s helped [...]

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An Accidental Cerebral Cavernous Malformation Diagnosis

Mighty Partners

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An Accidental Cerebral Cavernous Malformation Diagnosis

NewI discovered I had cerebral cavernous malformation (CCM) by chance. Earlier in the pandemic, I was in medical school and running a lot to relieve stress. When I returned home from my runs, I noticed my vision became bright, as if someone was shining a light into my eyes, which worried my mom and me. [...]

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Dr. Neena Nizar

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Rare Disease

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When Your Child With a Rare Disease Doesn’t Feel Brave

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

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Close up shot of woman eye looking at camera

Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

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Take a Mighty Minute

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@takeamightyminute

Mighty Minute 15h

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How do you prefer to contact or communicate with your doctor?

As a community living with one or more health conditions, we often spend a significant amount of time connecting with our doctors and care teams—whether they’re specialists, primary care providers, therapists, psychiatrists, or other medical professionals.

When it comes to communicating with your health care providers, what works best for you?

Do you prefer quick messages through a patient portal, the convenience of a phone call, the clarity of email, or the comfort of in-person visits? Maybe you rely on telehealth appointments for flexibility or value regular check-ins from your care team.

Share your preferences and experiences below! What communication methods make you feel heard and supported?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Depression #AutismSpectrumDisorder #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 17h

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What advice would you give to someone who finds it challenging to reach out for support when they need it?

For some, reaching out for help and support can be really challenging and even exhausting sometimes, especially if they're used to relying on only themselves. We totally get that!

What advice would you give to someone who experiences that challenge, but wants to seek support from others?

Mighty staffer @sparklywartanks shared that it took her years to ask for help and found it really challenging to open up to others. Although it took her awhile, practicing smaller gestures — like asking her mom for water when anxious or to go on a walk with her — allowed Nina to gather up the courage that made asking for support a more regular habit.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression #AutismSpectrumDisorder #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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Mona Palmer

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@proudsurvivor

17h

Helpful Info ... HERE!!! # #EhlersDanlosSyndrome

I had major brain fog earlier as I was sharing websites I've gained knowledge about my hypermobile EDS. This person is newly diagnosed so I'm praying this is allowed. Here goes, it's a LONG list: ( * means I've regularly visited for info or helpful tips!!
1. National Library of.
Medicine. *
2. edsawareness.com
3. Inspire *
4. Stuff that works *
5. Well-Being Hypermobility & EDS *
6. thefibroguy.com * - importance on proper nutrition with EDS *
7. Science direct.com - this throughly explains EDS
8. NORD- National Organization for Rare Disease *
9. Ehlers Danlos Society *
10. Mayo Clinic Connect EDS
11. edhs.info *
12. NIH- National Institute of Health &
13. eds.clinic
14. medlineplus.gov
15. WebMD *
16. Health direct - EDS
17. whatifitswhim.com - Rare Disease Resorces.
18. PatientsLikeMe - Health and fitness

Several of these: 10, 14, 16, 17 & 18 I've just recently come across. But knowledge I'd power and I'm researching for any new information that may help me get through the day. May I suggest something? Get a spiral notebook that is sectioned. Write down every site you get informative information. That's one section. Next section, what foods help and which to avoid. As well as vitamins and or supplements. This list is quite long. However, each individual diagnosed with EDS don't respond the same to medication, supplements, foods, ect. Third section- Anything you feel would be helpful hints for YOU!!
Stay Strong and Stay Positive

MedlinePlus - Health Information from the National Library of Medicine

Find information on health conditions, wellness issues, and more in easy-to-read language on MedlinePlus, the up-to-date, trusted health information site from the NIH and the National Library of Medicine.

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Take a Mighty Minute

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@takeamightyminute

Mighty Minute 1d

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List five words to describe your November so far.

This month (and year!) is passing by so quickly, Mighties! We're already at the halfway point of November, and what a month it has been. How are you? What have the past few weeks been like for you?

Check in with us using five words in the comments below. 🗓️

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #Anxiety #Depression #AutismSpectrumDisorder #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 1d

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In what area of your life is it hardest for you to ask for help? The easiest?

Asking for help is not always easy, and can be especially challenging for those of us who have had traumatic, negative, mixed, or empty results in the past.

What area of your life would you say is the hardest for you to ask others for help? Do you have areas that are easier?

Mighty staffer @sparklywartanks says the hardest area of her life is with her finances or with money in general, and the easiest is with her mental health.

👏 P.S. You are definitely not alone! Know that your experiences are valid and you deserve and are worthy of seeking the help you need.

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Rare Disease

Related Conditions?

I Won’t Let My CIDP Diagnosis Take Away My Dreams

Advice for Adults Seeking a Rare Disease Diagnosis

An Accidental Cerebral Cavernous Malformation Diagnosis

When Your Child With a Rare Disease Doesn’t Feel Brave

How My Daughter's Rare Disease Opened My Eyes

How do you prefer to contact or communicate with your doctor?

What advice would you give to someone who finds it challenging to reach out for support when they need it?

Helpful Info ... HERE!!! # #EhlersDanlosSyndrome

MedlinePlus - Health Information from the National Library of Medicine

List five words to describe your November so far.

In what area of your life is it hardest for you to ask for help? The easiest?

Feed for Rare Disease