Hi! I am M (they/them). I am making this post for my partner Sasha (they/them). Sasha is a coveted community member, advocate, therapist, friend, and partner. Sasha has navigated disability for over a decade including multiple chronic illnesses and pain conditions such as chronic migraines, fibromyalgia, PCOS, IBS, mast cell activation syndrome (MCAS), and more.
In February, Sasha injured their knee and we assumed it was a potential ACL tear. After months of medical neglect from a local primary practice, Sasha’s knee was left untreated. The pain, swelling, and mobility quickly worsened. Finally, we got an appointment with a sports medicine doctor and he issued an MRI immediately, something we had been fighting for for months. This is when we received a diagnosis.
In August of 2025, Sasha was diagnosed with Diffuse Tenosynovial Giant Cell Tumor (TGCT) - a rare degenerative joint disease. The doctors on Sasha's case confirmed statistics that around 43 in every million people are diagnosed a year and that they see only 1 - 2 cases a year. TGCT info below.
In easier terms, Sasha has a benign tumor that has taken over their entire knee joint, and has wrapped itself completely around it. Additionally, most of the cartilage in their knee is gone, meaning their bones are grinding together which add to the loss of mobility and pain. Their doctor also thinks that there is a meniscal tear due to the location and large nature of the tumor.
With this disease being as rare as it is, there are only a few doctors in the country that are equip to deal with it, and thankfully, one is here in Philadelphia.
On October 29th, two surgeons are going to go in and remove as much of this tumor as possible. The rate of reoccurrence is high, but we are hopeful for some pain relief and mobility to be regained.
With this being an intense surgery, with a recovery period, Sasha will be out of work for at least 4 weeks, with a buffer of 6 weeks potentially.
We are asking for community support to lend a hand towards 2 months of rent, bills, co-pays, recovery supplies (support pillows, wraps, etc.), and to act as a buffer as they regain momentum coming out of recovery and through the holiday season. This will help tremendously!
On top of the above, I was also let go from my job two weeks ago. A blessing in disguise so I can be Sasha's full time caregiver during recovery, but a huge hit to our household income, especially while Sasha is out of work. The support from you all will be so so helpful.
We also have a Meal Train (https://www.mealtrain.com/trains/14gk53) so you can sign up to cook for us , send us a gift card, etc. If you are wanting to help us in cleaning the apartment, a COVID safe hang, etc. during the recovery time, please reach out to M for scheduling.
Thank you all so much for everything.
Xx,
M & Sasha
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Information on the disease below
Tenosynovial Giant Cell Tumor : TGCT is usually a benign tumor that affects the synovial lining of joints, bursae, and tendon sheaths. There are two main types: localized (less aggressive, in small joints like the hand) and diffuse (more aggressive, in large joints like the knee or hip). While rarely life-threatening, TGCT can cause significant pain and disability, and the diffuse type has a higher risk of recurrence.
Read more about TGCT here:
Organizer
M S
Organizer
Philadelphia, PA