HNPP
.info
for patients, medical professionals and researchers
for patients, medical professionals and researchers
This website is to inform patients, medical professionals and researchers. Before you continue, please read the medical disclaimer.
This website is made by a patient, not by a medical professional!
I hope you enjoy the information that has been collected.
Hereditary neuropathy with liability to pressure palsies (HNPP) is a genetic disorder of the peripheral nervous system, causing the nerves to be increasingly sensitive to pressure, injury or repetitive use. It is one of many subtypes of Charcot-Marie-Tooth disease (CMT). CMT is a collective name for inherited diseases of the peripheral nervous system.
HNPP causes episodes of numbness, tingling and/or weakness in response to nerve injury from pressure, stretching or repetitive use. Things that cause these symptoms usually would not affect a normal individual. When injured, the nerves demyelinate or lose their protective covering. This demyelination is what causes the episodes of numbness and weakness in the injured area. The numbness and weakness is referred to as a ‘pressure palsy'. In time, the nerves recover, or partially recover and remyelinate. (source: hnpp.org)
The onset of HNPP is usually during adolescence or young adulthood, but it can start at any age, either in early childhood or later in life. While exceptions do occur, the majority of patients with HNPP develop initial symptoms around the first or second decade of their life.
Fill in the questionnaire and help the HNPP community to get more insights.
We have following information among participating members (414 contributors):
- Initial insights
- Most tried treatments
When having 86 more members, we will get insight in 'Most effective treatments'. You can post anonymously.
WE WANT YOUR (WISDOM) TEETH
https://blog.vib.be/the-woman-and-science-behind-an-incurable-disease
Professor Dr Esther Wolfs from the Biomedical Research Institute (BIOMED) of Hasselt University (Belgium) is looking for wisdom teeth from both patients with CMT1A and HNPP. She is able to convert stem cells from wisdom teeth into Schwann cells. "That is quite unique because few cells suit this purpose. Thanks to this discovery we are now able to imitate the genetic background of the disease. Our initial results look very promising: we can imitate the genetic defect in the Schwann cells."
(Source: https://issuu.com/vubrussel/docs/impactbrochure_eng_def/s/21175664)
You can contact her by email esther.wolfs@uhasselt.be
or by phone (Belgian number): +32 (0)11269296 (https://www.uhasselt.be/nl/wie-is-wie/detail/esther-wolfs). Please contact her BEFORE the extraction so she can contact your surgeon/dentist/orthodontist.
Her department covers for the costs of the transport of the wisdom teeth.
Phenotypes and Electrophysiological Features of Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) According to Physical Activities: A Single Military Hospital Experience
08/2024
Source: https://www.medrxiv.org/content/10.1101/2024.08.25.24312370v1.full-text
Kim, E. J. (2024). Phenotypes and Electrophysiological Features of Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) According to Physical Activities: A Single Military Hospital Experience. medRxiv, 2024-08.
Molecular Myelin Dysfunction in the Most Common Inherited Peripheral Neuropathies - CMT1A and HNPP
05/2024
Source: https://www.biorxiv.org/content/10.1101/2024.05.10.592618v1
Kathryn R Moss, Dave Gutierrez, Ruifa Mi, Aysel Cetinkaya-Fisgin, Ahmet Hoke, Molecular Myelin Dysfunction in the Most Common Inherited Peripheral Neuropathies - CMT1A and HNPP, bioRxiv 2024.05.10.592618; doi: https://doi.org/10.1101/2024.05.10.592618
Research Participants will be put thru testing on both days and then a Q&A with Dr. Li on Friday. If you are interested in participating as a research participant and/or seeing Dr. Li as a patient please email Stephanie at Sxuan@houstonmethodist.org. Please respond to her by the end of May if you are interested.
Anesthetic Considerations for Patients with Hereditary Neuropathy with Liability to Pressure Palsies: A Narrative Review
04/2024
Source: https://pubmed.ncbi.nlm.nih.gov/38667620/ Laudanski K, Elmadhoun O, Mathew A, Kahn-Pascual Y, Kerfeld MJ, Chen J, Sisniega DC, Gomez F. Anesthetic Considerations for Patients with Hereditary Neuropathy with Liability to Pressure Palsies: A Narrative Review. Healthcare (Basel). 2024 Apr 19;12(8):858. doi: 10.3390/healthcare12080858. PMID: 38667620.
There was a virtual conference with doctor Jun Li on March 22nd.
A summary of what was said, will be available.
https://ftrdergisi.com/uploads/pdf/pdf_4495.pdf
https://www.aminer.org/pub/65cf81e7939a5f4082cdf70c/an-interesting-cause-of-wrist-drop-the-crow-position-in-yoga-and
Kubra Isik,Zeki Odabasi, An interesting cause of wrist drop: The crow position in yoga and hereditary neuropathy with liability to pressure palsies, TURKISH JOURNAL OF PHYSICAL MEDICINE AND REHABILITATIO(2024)