Mucopolysaccharidosis  community-oneMPSvoice

If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.

oneMPSvoice
  • Social Wall
  • Trusted Resources
    • EducationScientific literature & patient education texts
    • People & PlacesHealthcare providers, researchers, & advocates
    • Community CenterOnline groups, photo galleries, & blogs
    • News & MeetingsLatest announcements & gatherings
    • Videos & VisualsChannels, infographics, & slides
  • Clinical Trial Education
  • Diagnosis Educator
Global Search
Global Search
Mucopolysaccharidosis community-oneMPSvoice
  • Social Wall Social Wall
  • Trusted Resources Trusted Resources
    • Trusted Resources Home

    • Education

      Scientific literature & patient education texts
    • People & Places

      Healthcare providers, researchers, & advocates
    • Community Center

      Online groups, photo galleries, & blogs
    • News & Meetings

      Latest announcements & gatherings
    • Videos & Visuals

      Channels, infographics, & slides
  • rareClinical Clinical Trial Education
  • rareClinical Diagnosis Educator
  • my Account
Global Search
Log in
Register
  • Register
  • Log in

    contact us
    have a question, issue or just some feedback for us? we're here for you.



    DISCLAIMER

    The information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.
    compose your message

      *

      *


      message

      *

      message sent

      email sent successfully

      suggest a poll

      you must have an account to suggest polls.

      join now

      rareLife solutions 606 Post Road East #397
      Westport, CT 06880
      You are receiving this because you have an account on www.oneMPSvoice.com
      To unsubscribe from these emails, click here

      Trusted Resources: Community Center

      • Caregiver Stories
      • Community Interviews
      • Patient Stories
      Back to Community Center / Caregiver Stories

      Raising an Adult Child With Sanfilippo Syndrome Is Tiring


      I am tired. Caring for my 25-year-old daughter, Abby, whose body is giving up on her, is tiring.

      She has Sanfilippo syndrome, a cruel, relentless disease that is stealing her from me. When I have time to sit and gain perspective of the situation and face the fact that this disease will end her life at some point, I am incredibly sad. But the day-to-day care she needs is so tiring. I have to be sure someone is caring for her while I write this column.

       

      Source: https://sanfilipponews.com/2021/07/16/raising-adult-child-with-sanfilippo-tiring/
      Share
      Discuss in Social Wall
      Share to rareTeam
      Bookmark

      Related Content

      • education
        Intracerebral Gene Therapy in Four Children With Sanfilippo B Syndrome: 5.5-Year Follow-Up Results
        We report the safety (primary endpoint) ...
      • Community Center
        Extraordinary Experiences Program
        Program provides grants of up to $1000 t...
      • Community Center
        Fatal Care Research Foundation
        Fatal Care Research Center inaugurated a...
      • Community Center
        National MPS Society – Twitter
        National MPS Society is a nonprofit orga...
      • news & meetings
        Feeding Tips for Children With Sanfilippo Syndrome
        Disabilities due to Sanfilippo syndrome ...
      • education
        Challenges of Enzyme Replacement Therapy for Sanfilippo Syndrome
        What Is Enzyme Replacement Therapy?Enzym...
      • people & places
        MPS Europe
        MPS Europe gGmbH is established on 30th ...

      send a message

      send to:
      subject:
      message:
      Back to Top
      edit tags:

      Reset password

      Enter Phone Number

      Enter the code

      Almost done!
      We just send a four digit code to your mobile number. Enter it here to login!
      Didn't receive the code? Re-send
      Or login in with your password instead

      password changed successfully!

      oneMPSvoice

      please log in with your email address and new password.

      your activation key expired

      oneMPSvoice

      this confirmation key has expired. please try to log in again or resend confirmation email.

      confirmation email sent

      oneMPSvoice

      a confirmation email has been sent to your inbox. click the link in the email to activate your account.
      can't find the email? be sure to check your spam folder.

      password reset email sent

      oneMPSvoice

      an email has been sent to you with a link to reset your password.
      can't find the email? be sure to check your spam folder.

      oneMPSvoice

      If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.

      your account is now activated!

      oneMPSvoice
      • register
      • log in

      Join the community

      You need an account to use this feature.

      Already have an account? Log in.

      I have read and understand the oneMPSvoice privacy policy and terms of use.

      Almost done!
      We just sent a four digit code to your mobile number. Enter it here to log in!
      Please Wait!!!
      Didn't receive the code? Re-send
      Or log in in with your password instead

      Log in

      You need to log in to use this feature.

      Don't have an account? Click here to register.

      you haven't confirmed your email address yet. resend confirmation email

      Forget your password? Reset here.
      Or log in with a one-time code
      or register with

      login with:


      Need to get in touch?

      Powered by

      • About Us
      • FAQs
      • Legal & Privacy
      • Contact Us
      © 2023 rareLife solutions Inc.

      Want to find the info you need faster?

      The symptoms of Mucopolysaccharidosis and the treatments that are available vary depending on which type of Mucopolysaccharidosis a patient has been diagnosed with. Select which type you want to learn more about, and can highlight the resources that are most relevant to your MPS/ML type.


      Not now