By Tatiana Corbitt

November 10, 2023

2 min read

Last updated: November 2023

Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it isn’t always easy to safely access the outdoors.

However, when I spend time in nature, I feel better – not only emotionally but also physically. Living close to forest trails helps me have an improved life quality as a person living with a rare disease.

Access to medicinal herbs

One of the benefits of local green forest space is access to free medicinal herbs. As a person with a rare disease, treatment options are limited. My rare disease, narcolepsy, isn’t as well understood as other, more common diseases.

My treatment plan has improved over time but has been stagnant for years now since stabilizing. There just aren’t any more pharmaceutical drugs to try for narcolepsy…I’ve tried them all! And my narcolepsy symptoms still disable me, though they are mercifully improved with treatment.

Adding herbal remedies to my narcolepsy treatment plan

I like adding herbal remedies to my treatment plan to help improve my health outcomes. For example, this winter, I’ll be drinking echinacea tea to keep my immune system stimulated and my body healthy through this upcoming cold and flu season. I don’t harvest this herb locally, but it is a goal of mine to learn to (safely) harvest local herbs for similar medicinal uses. It feels empowering to know that I can make small changes in my health or quality of life by doing so.

Be an informed forager

Other natural medicines found in forest spaces include mushrooms and other fungi. Mushroom or plant identification requires a great deal of skill. To safely consume wild mushrooms or plants, you have to know all of the possible local mushrooms and plants, which are edible or not, which are poisonous or not, and which are medicinal. It is difficult to do, but not impossible. This is one skill I hope to gain, so I can benefit even more from the beautiful green forest spaces around me.

Please note that it is important to ask your doctor before starting or stopping treatments, including herbal or fungal medicines, as there are many drug interactions or side effects that can occur.

Access to green space makes me feel better

Overall, I have found that having access to a local forest green space has improved my health in many ways as a person living with a chronic rare disease like narcolepsy.

Hiking allows me to move my body in ways that feel good and increase my stamina and strength. On days when I have more severe symptoms but still want to spend time in nature, I can spend little to no time and effort getting to a trail to see some trees, plants, and birds. And I feel better for it, even if I am still tired afterward.

Do you find nature therapy beneficial for your rare disease? How so? Please share with us in the comments below!

https://raredisease.net/living/nature-therapy

https://raredisease.net/living/nature-therapy

The number of rare diseases reached 432 types.

The third medical commission of Iran’s Rare Diseases Foundation was held on Sunday, November 7, with the confirmation of 10 other rare diseases.

According to the public relations report of the Rare Disease Foundation, these diseases include:

CoQ10 deficiency

Angelman syndrome

Rohhad syndrome (IBS)

Cohen-Gibson syndrome

Cushing’s syndrome

Craniosynostosis

Macrophage activation syndrome (MAS)

Hereditary primary hypomagnesemia

Giant Axonal Neuropathy

Hypophosphatasia (HPP).

This commission was attended by Dr. Yaser Davodian, Chairperson of  Iran Rare Diseases Foundation, Dr. Hamidreza Edraki, CEO of the Foundation and member of the academic faculty of Shahid Beheshti University, Dr. Mehdi Norouzi, Vice President of Research of the Rare Diseases Foundation, Dr. Ali Tagavi, a member of the Scientific Council, and Dr. Mohammad Haqshenas. Internist, Dr. Shadab Salehpour, pediatric endocrinologist and metabolism specialist, Dr. Siamak Abdi, neurologist,
Dr. Hossein Afra, Vice President of Medicine, Dr. Tayebe Khamsi, Vice President of Education, Somaye Hasanpour, Vice President of Rare Diseases, and Roya Tavakoli, responsible for International Affairs of the Foundation, were held.

The US Food and Drug Administration (FDA) has approved zilucoplan (Zilbrysq, UCB) for the treatment of generalized myasthenia gravis (gMG) in adults who are antiacetylcholine receptor (AChR) antibody positive.

Zilucoplan is the first once-daily, subcutaneous, targeted C5 complement inhibitor for gMG for self-administration, the company said in a news release announcing approval.

gMG is a rare, chronic disease that affects almost 200,000 patients in the United States, the European Union, and Japan.

Patients with gMG can suffer a variety of symptoms, including drooping eyelids, double vision, and difficulty swallowing, chewing, and talking.

They can also experience severe life-threatening weakness of the respiratory muscles. In about 80% of patients, the condition progresses to generalized muscle weakness.

Clinically Meaningful Improvement

The FDA approval of zilucoplan for gMG was based on safety and efficacy results from the phase 3 RAISE study, published in The Lancet Neurology in May.

The study randomly allocated (1:1) 86 adult patients who were AChR antibody positive with gMG to receive daily subcutaneous injections of zilucoplan 0.3 mg/kg or placebo for 12 weeks.

“Zilucoplan treatment showed rapid and clinically meaningful improvements in myasthenia gravis-specific efficacy outcomes, had a favorable safety profile, and was well tolerated, with no major safety findings,” the investigators reported.

The most common adverse reactions (≥10%) among patients with gMG were injection site reactions, upper respiratory tract infection, and diarrhea.

“For people with gMG, the unpredictable nature of the severity and frequency of symptoms can be debilitating and can have a substantial impact on many aspects of their day-to-day lives,” lead investigator James F. Howard, MD, distinguished professor of neuromuscular disease, the University of North Carolina at Chapel Hill School of Medicine, said in the release.

“Zilucoplan demonstrated rapid improvements in gMG symptoms at Week 12, with differences seen as early as one week, and provides a new treatment option for a broad population of AChR antibody-positive gMG patients,” Howard added.

In June, the FDA approved rozanolixizumab (Rystiggo), also from UCB, for the treatment of adults with gMG who are positive for AChR or anti-muscle-specific tyrosine kinase (MuSK) antibody, as reported by Medscape Medical News.

Rozanolixizumab is a subcutaneous-infused humanized IgG4 monoclonal antibody that binds to the neonatal Fc receptor, reducing the concentration of pathogenic IgG autoantibodies.

“This is an important development for the community because, with more FDA-approved treatments for generalized myasthenia gravis, physicians have additional tools to treat this disease in individualized ways that are the right fit for each individual patient,” Samantha Masterson, president and CEO of the Myasthenia Gravis Foundation of America, said in the news release.

http://www.medscape.com

The providing  and editing of the national rare diseases document is one of the most vital activities of the Rare Diseases Foundation, and in this regard, the Rare Diseases Foundation of Iran, with a lot of endeavor  and follow-up, and with the participation and cooperation of the professors and expertise of the Foundation and other universities of medical sciences, prepared and compiled the National Document of Rare Diseases of Iran, which after being approved by the Secretariat of the Supreme Council of Health and Food Safety and the cooperation and collaboration of the honorable officials of that ministry and other related institutions, was finally approved by the honorable president and announced. Undoubtedly, the declaration of this document can be a very huge and effective step in determining the duties of the institutions and beneficiaries related to these patients, providing services to rare patients and their families, and solving the problems of these patient respectfully

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http://radoir.org/en/wp-content/uploads/2019/01/6.pdf