Resource highlight:

Posted Saturday November 12, 2011 by Melissa main page main pageI wanted to start highlighting some of the resources that might be helpful to MPS families, Hunter Syndrome families specifically, or special needs families in general.

You might call this post a little self-serving. No doubt I was delighted to take a peek at the redesigned and see the smiling face of Case and my husband as well. But I was even more pleased to review the site and see some of the changes and additions that make it even more helpful for newly diagnosed and veteran families alike.

Site Highlights

  • Basics about the condition and specific signs and symptoms: I was encouraged to see that it seemed to focus more on those early symptoms that may seem innocuous, but when put together, can lead to a diagnosis, such as colds, constant runny nose, hernias, ear infections, a large head and abdomen, and breathing problems.
  • Family Voices: A section of stories of other Hunter patients and their families from the HunterPatients newsletters.
  • Kyle’s Blog: A blog by an actual Hunter Syndrome patient named Kyle.
  • A new Hunter Parents community: A forum to discuss educational issues, emotional support, tips, balancing life, and sibling issues. Registration is required and you cannot discuss treatments.
  • Managing the disease: Short and sweet information for newly diagnosed families about potential management issues
  • Medical progress: To me, this section was a wealth of information. It highlights one’s ability to keep up with the latest in research via three avenues:
    • National MPS Society
    • Clinical trials
    • Medical congresses
    • Research publications
  • Specific information for healthcare providers: The site offers information tailored to various medical specialties that may be the first line of diagnosis for MPS patients like ENTs, pediatricians, nurses, and geneticists. This could also act as helpful handouts for families to bring to their specialists who may be less familiar with Hunter Syndrome.

[flagallery gid=5 name=”” skin=default]


While some pharma-sponsored sites (this site is organized by Shire HGT, the maker of Elaprase – the enzyme replacement therapy for Hunter Syndrome) provide little additional information, this site does offer a well-organized and focused source of information for new families who are often hungry to find data, stories, and research in their search to understand and predict a mystifying and unpredictable disease.

Only time will tell whether the Hunter Parents effort takes off, but because the site is sponsored by a pharma company restricted by certain rules, the terms of use do not permit discussion of specific products, treatments, and therapies. A great deal of what Hunter parents talk about and want to talk about is drug, treatments, clinical trials, and therapies. When I talk with other MPS parents, we spend at least half of our time talking about just that. It will also compete for time and attention with the MPS/ML Forum, where people have developed lifelong friendships and advise on complicated and everyday issues, and with the Facebook MPS group, where it is easy to find quick responses to questions.

What I would love to see is some tailored and curated resources and advice about services, education, and the like. One of the biggest challenges we have as MPS parents is obtaining the necessary education, therapy, social services, and healthcare for our kids.

Time will tell how the community effort fares, but the redesigned site as an overall resource is certainly off to a good start.

You may also like:

One Response to “Resource highlight:”

  1. Melissa that is fantastic! The picture of Case and his dad is so precious!