#AskMe

Leave any thought on this in the comment section. I would love to chat! #Sleep #MentalHealth #MightyPoets #AskMe

We’re creating an #AskMe video with one of our partners, Alnylam Pharmaceuticals, about life with primary hyperoxaluria type 1 (PH1), a rare disease that mainly affects the kidneys. We’re calling for community questions that may be answered by an expert physician in this upcoming video. That’s why we’re asking: what questions do you have about PH1?

Add yours in the comments below.

Your questions may be used in an upcoming sponsored video with Alnylam featuring a physician with deep expertise in PH1. This video will be published on The Mighty’s Facebook channels. Your questions will remain anonymous in the video. You can read The Mighty’s full privacy policy at themighty.com/privacy

#PH1 #KidneyDisease #RareDisease

We’re creating an #AskMe video with one of our partners, Alnylam Pharmaceuticals, about life with primary hyperoxaluria type 1 (PH1), a rare disease that mainly affects the kidneys. We’re calling for community questions that may be answered by an expert physician in this upcoming video. That’s why we’re asking: what questions do you have about PH1?

Add yours in the comments below.

Your questions may be used in an upcoming sponsored video with Alnylam featuring a physician with deep expertise in PH1. This video will be published on The Mighty’s Facebook channels. Your questions will remain anonymous in the video. You can read The Mighty’s full privacy policy at themighty.com/privacy

#PH1 #KidneyDisease #RareDisease

We’re creating an #AskMe video with one of our partners, Alnylam Pharmaceuticals, about life with primary hyperoxaluria type 1 (PH1), a rare disease that mainly affects the kidneys. We’re calling for community questions that may be answered by an expert physician in this upcoming video. That’s why we’re asking: what questions do you have about PH1?

Add yours in the comments below.

Your questions may be used in an upcoming sponsored video with Alnylam featuring a physician with deep expertise in PH1. This video will be published on The Mighty’s Facebook channels. Your questions will remain anonymous in the video. You can read The Mighty’s full privacy policy at themighty.com/privacy

#PH1 #KidneyDisease #RareDisease

So I am terrified at the moment, I have neurofibromatosis, it's impacted my life in many ways over my 45 years of life, I remember the stares and the pain of my ankle surgeries, the tumors I have had removed, finding out that I have a brain tumor, the learning and development issues. My struggle with numbers and math, from telling time, to remembering what I was taught about math.
But I have been having problems with smelling things that aren't really there, and not being able to smell what is.
I am having yet another MRI to see if my tumors in my brain are growing. I had cyberknife a few years back to try and shrink them and it helped, I just don't want to go through this again, NF combined with my other health issues I am just ready to be a timelord and regenerate, or a werewolf with healing powers 😆 seriously though, if you have NF too I am sorry for what you are going through.

You asked, an expert answered!  ​💡

🧠​ Here’s what neurologist Dr. Elena Grebenciucova had to say:

“Exercise is very important for all people living with multiple sclerosis. However, creating an exercise plan is best done initially with a physical therapist to ensure that the type of exercise you are doing is ultimately safe for you, in case you have some level of trouble with balance or weakness. Exercising 3-4 times a week for 30-45 weeks is ideal, but many patients new to the exercise regimen or still recovering from their recent attack need to ease into exercising very slowly and gradually increasing their time. For example, if you are very fatigued, you may find it very difficult to exercise, but if you try and set a goal of just 10-15 minutes 3-4 times a week, and then gradually over time increase it to 20-30 min and finally 30-45 min, the process may be easier.

For those people who experience spasticity/muscle spasms, stretching before exercise is critical. Also, you have to make sure that you are not overheating during the exercise. In order to avoid overheating, make sure you hydrate plenty prior to exercise and during exercise, wear appropriate clothing, and take frequent breaks, as well exercise in a well-ventilated, cool area. If you still feel that exercising causes you more muscle spasms or heaviness in the legs or more tingling, try to reduce the intensity of the exercise and take more frequent breaks.

Aerobic/cardio exercise is important for all patients with multiple sclerosis. Exercise helps to reduce fatigue levels, improve mood and sleep, and maintain muscle mass in those people who may have some level of weakness.”

#MultipleSclerosis #Disability #ChronicIllness #ChronicPain #MentalHealth