Three forms of Neurofibromatosis (NF); NF Type 1 (NF1), NF Type 2 (NF2) and Schwannomatosis (SWN) are very different, but they all result in the growth of slow growing but still painful, dangerous, potentially life threatening tumors. There is no treatment to permanently; stop, shrink and prevent more NF tumors from growing, but all NF tumors do not require treatment.
Management of health for individuals with NF includes regular Neuro-Oncologist visits, MRIs to monitor the tumor growth and issues and surgery to remove of one tumor at a time. The constant need to see doctors, purchase medications, have different medical test and treatments are a financial burden that results in issues that increases the risk of the dangerous, life threatening health issues, when not lowering the quality of life due to financial limitations.
Read more to understand; the unfortunate aspects of NF, why a cure for each NF type is needed and why it is to the advantage of many other than people with NF to find a cure.
The unfortunate aspects of NF are when individuals have painful, life altering, when not life threatening tumors and cannot get the best treatment available. Inability to get the best available treatment is the result of a few factors:
The issues with these is that; 1) so far there has only been some development for NF1 and NF2 Target Tumor Treatments, 2) none of these to date works for each person for the tumor type being targeted, 3) NF1, NF2 and SWN each results in the growth of more than one type of tumor, so at best these current options would only delay the growth of some tumors, 4) since these are only at the Clinical Trial stages few with NF1 and NF2 can get them, 5) with the current Clinical Trials since they do not destroy tumors but only reduce size or slow growth in some people, which many people with NF are content to have since some of these Clinical Trials can delay some of the life altering tumors or allow them to live longer, none currently available will ever be approved by the FDA.
The ultimate treatment is needed. Treatment to stop the damage each form of NF does in tumor growth and other issues that can result from NF not included needs to be found. Research is expensive, but enough research so far has concluded that treatments to stop each NF type would also help with other conditions as well, in addition to allowing people with NF to live healthier lives without putting pressure on insurance and families for constant need for treatments.