When it comes to getting the best advice for those living in the world of genetic–we ask the experts–you! We took to our Facebook to ask this week’s “Rare Share” question.

“For those of you who are rare disease caregivers, what has been the hardest adjustment you have had to make? What advice would you give someone who is just now becoming a caregiver?” Here is how you responded:


“Allow people to help when they ask!”

-Lauren S.C.

“I have completely changed my life to care for my son. I am used to it now, it’s not always easy. My advice is to stay connected to friends and family. Also, if you need help, ask for it. You cannot always do it alone. Find support, emotional and physical.”

– Julie D.

“Urban Isolation is the hardest adjustment. I would recommend to learn, join studies, get involved to get an understanding the course of the illness.”

– Julita L.

 “You are stronger than you think and remember to breathe.”

– Gail C.K.

“Find something positive to celebrate as often as you can. Lean on the upbeat and supportive friends and family members in your life. And my favorite advice from a favorite poem, the Don’t Quit poem, “When care is pressing you down a bit, Rest if you must, but don’t you quit.”

– Kristin S.S.

‘Making sure you give your other child/children the time they need. It doesn’t need to be equal, but they need some undivided attention sometimes. However, teach them that you may need to give your special needs child more attention, but that doesn’t change your love for them. Every family is different, so this is your family’s normal.’

– Leah B.

“Make sure you surround yourself with people that love & emotionally support you. In my darkest days, they have helped me to make it through. And what I tell myself several times a day “Live in HOPE” that a cure will be found.”

– Denise H.

“Pick your battles and accept that other’s do not realize the day to day effort it takes.”

– Kelli D.B.

“One day at a time.”

– Raileen E.


“Accepting help! And knowing its ok that you can’t do it all, all of the time!”

– Tanya O.


“Realizing that its ok to find some time to take care of myself too.”

– Stacey H.M.


“Learn to accept help, and when someone asks to help, think of something even a walk in the sunshine or a cup of coffee, I so miss adult conversation and the ‘normal” life.”

– Cassandra  A.C.


“Learn to take some time for yourself, even if only a few minutes a day.”

– Sharon A.


“Open your heart because there is a lot to love!!!”

– Samantha J.G.

 “STRENGTH to all the caregivers. Some of us are our own caregivers, as patients, which is a level of difficult that may be hard to realize or understand.”

– Sharon R.N.


“Be prepared for stupid questions and to have to explain it for the 400th time as they didn’t get what you said the first 399 times. Accept that sometimes people see it as too hard to stick around… they were not worth your time anyways.”

-Gemma S.

“The biggest adjustment is constant uncertainty. My advice is to question everything. Our doctors are amazing but they’re human. I realize that my son’s “expert” is me and I should be confident asking as many questions as I need to.”

– Taricia B.

“It takes prayer, a lot of prayer and acceptance of the situation. “

– Karen S.D.



2 thoughts on “Rare Share: Best Advice for Caregivers?”

  1. Carri Levy says:

    Be an advocate. Educate physicians.Never give up.

  2. It’s okay to cry. There is grief in the loss of the life and/or child you thought you would have. But don’t just cry, come to embrace and celebrate each day of the life you now have, because it’s probably teaching you just how valuable each and every moment really is.

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