Patient of HHT and Mom of child with HHT
I was diagnosed with HHT (a rare blood vessel disorder) in 2023 after 4 years of searching for answers. My son was diagnosed a year later. I receive Feraheme iron infusions every 3 months. My symptoms are worse now as I get older. I bleed daily, the blood spots on my fingers and face keep appearing more frequently and I'm being challenged with severe inflammation, pain in my joints, eye and mouth dryness as well as other symptoms. If anyone has questions, please reach out. I know it can be confusing.
Hi Donna! Thank you for reaching out! My son is doing great. He manages his symptoms and plays sports and is able to do the things he wants to do so that's wonderful. Because of our diagnosis and journey, I launched a nonprofit called Serenely Guided Foundation (serenelyguidedfoundation.org) that supports patient and caregiver resources and creates awareness for all rare diseases. Anyone can reach out to us for meal support or to engage and learn about our work with student enrichment programs so students of any age can learn the basics of rare disease, genetic testing, clinical trials and volunteering in their community. Warmly, Sarah
, thank you so much for sharing that! There is light all around it! It is so hard to find support for rare conditions, and not a lot of attention to nutrition, which is critical. It is also amazing that you serve caregivers too, so many times caregivers feel isolated and alone. I appreciate all that you have done, and what a wonderful tribute that is to your son. I am so glad to hear he is thriving. Thank you for my feel-good moment at the end of a long week <3 - Warmly, Donna (Team Member)
Hi
, I'm sorry to hear that your experience has grown more painful. How is your son doing? Has he had any improvement? I'm hoping that they develop something that helps bring relief. - Warmly, Donna (Team ember)
